Tag Archives: Disability

Courage at Twilight: Drying the Dishes

Home from work, I cleared the countertops and sinks of cups and bowls and spoons, loading them in precise fashion in the dish washer—I know exactly how each piece fits in its space. For decades I have taken great offense [hear my self-pitying sigh] at finding a dish in the sink after I have used copious quantities of my time and energy to empty the sink, and since I am the one that empties the sink, leaving a dish in the empty sink implies an unfair presumption that I am the family dishwasher servant [more self-pity].  When Mom takes these random dishes out of the sink and puts them in the dishwasher, I thank her, and am grateful for her courtesy to me.  But it was time to stop ruminating and to load Dad into the Faithful Suburban so the dermatologist could examine this tag and that mole and this scab that will not heal, the skin doctor who is smiley and polite but profoundly disinterested.  “Hello!  How are you!”  Three minutes of examination, and a declination to remove this or that because it is harmless even if Dad does not want this or that attached to his body because it does not belong and asks to have it removed.  “Good-bye!  Have a great afternoon!”  I had terrible trouble getting Dad into the car, both times, succeeding only with an ungainly combination of pushing and lifting and shoving until he was on the seat and my muscles quivered and my lumbar complained.  I had wondered what I would do if he could not rise from his wheelchair or if he collapsed once risen, and I had no answer—the only answer was getting him in somehow.  “That was our last trip to Dr. Jensen,” I whispered to mom, distressed.  And that distress and my tweaked back stalked me through making dinner and eating dinner and cleaning up after dinner and up the stairs and down the weeks and months of wakings.  But Mom is sweet, and recently has taken to putting aside her needlepoint and shuffling over to the kitchen sink to towel dry and put away the pots and pans I have just washed, and I appreciate her effort to say thank you with a towel and an empty sink.

(Pictured above: felt rose craft I made for Valentine’s Day.)

(Pictured below: my valentine from my sweet granddaughter Lila.)

Courage at Twilight: Transference

We have experienced another week of steady decline in Dad’s mobility.  He has suffered increased weakness.  I have suffered increased worry.  He cannot walk.  Life is very different when you have walked for 86 years and suddenly find yourself paralyzed and immobile.  The word of the day is “transfer,” by which I mean the experience and process and effort of shifting one’s bulk from one seat surface to another, like from and wheelchair to a toilet, or from a shower chair to a walker chair, in which one moves laterally rather than vertically, and does not ambulate.  I sat down across from Dad to suggest the time had come to focus on transferring rather than walking.  “I think we should refocus our approach,” I explained.  He nodded in sad reconciliation, feeling humiliated and small.  How could I reassure him?  In truth, with the power wheelchair, he can enjoy greater independence and freedom of movement than with trying to walk.  But transference is a skill to be practiced—it is not an easy exercise, and I invite you to pretend your legs do not work and try transferring from one chair to another with only the strength of your arms and the span of your bottom.  Now add arms to those chairs.  To help him transfer from off his sofa to his wheelchair, I installed risers under the sofa feet, raising the couch five inches, and screwed three inches of lumber to the legs of his recliners.  Struggling with this new necessary skill, his transfers can be, shall we say, inaccurate, like onto the arm of a chair instead of into the seat of that chair.  Some transfers are violent, like when he fell from his wheelchair onto his couch so roughly that he knocked the couch of its risers and was lucky not to capsize altogether.  Since the escapade did not end tragically, I can comment after-the-fact on how I wish I had seen it happen and how funny it must have seemed.  A hair’s breadth of fate or providence separates tragedy from comedy.  Dad pronounces all his mishaps as comical, veritable jokes, although he curses more than he laughs when in the midst of transference.  Mom pounced on me when I came home from work, before removing my coat and tie, asking me to re-elevate the couch.  Then she showed me the toilet plunger sitting in the kitchen sink, and explained how the food disposal had plugged up with old spaghetti, and she could not clear the clog, try as she might.  Putting my height and weight into the plunger, I compelled the dirty water and ground up food through the pipes and successfully drained the sink and emptied the disposal.  She is always so grateful when I fix things she can no longer manage.  The next problem to solve involved her pharmacy of 24 years.  She and Dad had received letters informing them that their pharmacy was no longer in their insurance network, and in only two weeks they would have to pay full retail price for their medicines.  I offered to help switch to a new pharmacy, and envisioned the hassle and weariness of assembling all the prescription bottles and insurance cards and driving to the new pharmacy to see the staff and taking an hour to input the data into the new system, and the weather was very cold, and the streets icy, and the sky darkening at 4:30 p.m., and I really did not want to leave the house on this cumbersome errand.  Instead, I called the store, they took our information, and promised to get their information transferred from the old pharmacy to the new.  Mom beamed, amazed at my miracle working with the sink and the pharmacy.  I will try to elicit the same response with tonight’s dinner.  It is time to shift from writing to cooking.

(Pictured above: Italian pesto pasta and chicken with brazed asparagus.)

Courage at Twilight: Old Man’s Lament

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: Not a Walker

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: Banana Pancakes

“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: The Time Is Six Months Past

I could hear a new voice from upstairs, a raised voice that began with “Hello!” and I knew that Sarah was giving Dad a long talking to. Through Marco Polo I had told her I needed professional advice on how to help Dad, and she had come with resources and with the right tone of voice, the tone of voice Dad learned years ago not to argue with or fight against, the tone of voice that said, This will happen!  When I thought the most important declarations had been declared, I thought I ought to join the conversation.  “Dad, you won’t ever get better.  Getting better is not the goal.  That’s the reality of where you are.  You should have begun using the walker a year ago, not never.  You should have begun using the wheelchair six months ago, not last week.  The goal is to keep you safe.  It’s time you ordered a motorized wheelchair.”  And he did not want to discuss an electric wheelchair.  “But Dad, when people see you zipping around in your motorized chair, they will think how young and active and motivated you still are, and how smart.  When they see you hanging on Roger and leaning on your cane and stumbling all stooped, they think how old you are and how you’re going downhill and how decrepit you’ve become.  The wheelchair is not a humiliation.  What you’re doing now is a humiliation.  The wheelchair is a tool of triumph, and will extend and improve your life and give you new energy and independence!”  And I agreed with every word she said, because they were all true.  She was not angry or rude, of course, just insistent that we face our reality and adjust our strategy.  She softened her voice: “We’re not ready for you to go, Dad.  Your mind is still laser sharp: you read several books a week.  We don’t want you to fall.  We don’t want you to break an arm or a leg or a hip.  We want you to stay safe so you can live in your home for years.”  And I agreed with every word she said, because they were all true.  Dad knew, too, that she spoke truth, insistent and intractable and loving truth.  And he assented.  “I’m not ready to go,” he declared.  “I will do whatever works.”  Home health is coming next week.  Physical therapy is coming next week.  Occupational therapy is coming next week.  Dad’s a fighter, and is not ready to yield the fight.  Dad has time yet, years of time, and we are determined to help him live those years.

(Pictured above: Mom and Dad in 2008.)

Courage at Twilight: Carpets, Canes, and Wheelchairs

You can imagine cream-colored carpets gathering dirt during regular big-family events where my siblings and their children and their children’s children gather to eat and talk and sing and eat more and tell stories and play games. Certain high-traffic areas are especially prone to pollution: passages between sofas; recliner curtilages; where the little ones play.  Dad has always enjoyed keeping the carpets clean, with his own carpet shampooer that begins with clear water and soap and ends with water dyed black.  He brings the carpets back to clean newness.  When I came home from work on an evening, I found him pushing the machine with one hand, barely balancing with his cane in the other, grimacing and red, and awkwardly bent at knee and hip, seeming ready to sink at any moment.  Seeing a crisis in the making, I stood with my back against the wall, waiting for him to collapse, my body tense and taut and my mind stressed and focused.  I do not take over and I do not chide or boss.  I wait and watch.  But this waiting is far from a passive, peaceful exercise: while the body is poised and still, the energized state of preparedness to pounce in advance of disaster takes a toll.  And at church he leans so heavily on my arm as I tip-toe stoically past the pews, waiting again for the trip and fall, or the spontaneous collapse.  Whether or not he was ready, for me the time for the wheelchair had come, so we had a talk.  I explained that our church mobility method was too stressful for his body, leaving him weak and fatigued for days, and was too stressful for my mind, with his every step an imminent disastrous fall.  I confessed to not being mentally sufficiently strong to stop my life’s orbit to stand with my back against the wall and watch him struggle and anguish over once-easy tasks, to stand tense and taut waiting for him to fall, at which moments I want to scream at my impotence and the agony and futility of his struggle.  I gave the kindest gentlest ultimatum I knew how: “When we go to church tomorrow, I would like you to use your wheelchair.”  It would be much easier for him and for me both, and I would appreciate it.  He looked at me, emotionless, then looked into some unseen distance, without a word, and I knew he was wrestling with overwhelming feelings of uselessness and obsolescence and whether the fight were worth the effort.  Dad has told me a hundred times, “I’m a fighter!” and his fighting spirit has seen him through many an adversity, has kept his family and his own life going in spite of terrible obstacles.  Assaulting Dad’s dignity and dousing the hot ember of his fighting spirit would hasten his demise and would be perhaps my life’s greatest sin.  So, I left my ultimatum-turned-plea floating heavily in the silent room, hoping he could find the mental niche that would allow him to use his wheelchair and to still fight on for life.  The next morning, he greeted me from his bowl of Cheerios and blueberries with a smile and called out, “Rog!  It’s time for church!  Grab that wheelchair and start up the Mighty V8!”  Hallelujah! sighed my spirit.  Glory Hallelujah!

Courage at Twilight: Pupusa Paralysis

“This reminds me of Brazil!” Mom exclaimed, not so much for the garish lemon-yellow and orange-burnt-umber and royal-blue paints and the grimy broken baseboards and the uncleanable black-and-white-checkered linoleum-square floor, but the for smells and humid heat of fried corn paste and stewed pinto beans and shredded port, and for the smiling brown-skinned servers and the radio trumpets and the humble homemade feel of the place. I had brought Mom and Dad to Carlos’ El Salvadoreño Café, for grilled bean-and-cheese pupusas and cinnamon-rice horchata and fried plantain empanadas with sweet cream for dessert.  “Las pupusas se tardan.  Por favor tengan paciencia.”  Pupusas take time.  Please be patient.  I knew this from experience, and so we reminisced beneath a blue El Salvadoran flag pinned to the wall.  We ordered two pupusas each, but could eat only one-half each—I had forgotten how filling pupusas are—and took the leftovers home for next day’s dinner.  I helped Dad walk to the restroom, but the return trip took a bad turn.  Even with my arm hoisting under his, his legs suddenly and simply would not move; they began to shake and buckle.  A kind and friendly teenage server rushed to buttress Dad’s other arm, and we inched across the restaurant floor.  “I don’t feel old,” Dad lamented, “I feel paralyzed.”  And I wondered if both were two faces of the same reality.  Mom was waiting in the cooling Mighty V8, which I had parked just outside the restaurant door.  Despite the struggle, we considered the outing a success.  It does Mom good to get out of the house, and it does Dad good to be out with Mom.  We may not venture out again, to Carlos’ Café or anywhere else, without a wheelchair, but I am thankful the wheelchair may make further fieldtrips possible, safe, and even enjoyable.  My Sunday-night snack of pupusa revuelta, with a slice of hot banana chocolate walnut bread, hit the spot, though I wish I had saved some horchata.

Courage at Twilight: Cherry Cheesecake

Do you know the sound of stainless-steelware clanging on a ceramic tile floor, that ear-thumping clatter that causes a physical cringe and sometimes an annoyed bark or expletive? When I hear that awful sound, I jump up from whatever chair or sofa I am occupying and bend to pick the knife or fork up, because Dad cannot.  “The floor is no-man’s land,” he looked at me with a rueful chuckle.  He cannot bend to pick up the knife, or the onion ring, or the paper between the Swiss cheese slices, or the potato chip that falls to the floor.  “This is such a joke!” he laughs, looking at the butter knife on the floor.  But his laugh is all wrapped up in sadness and frustration and a growing discouragement, and his reference to the “joke” is chagrined—not bitter or angry or hateful, rather just recognizing the irony and perhaps cruelty but inevitability of one’s late-life dis-abilities.  I am certainly not laughing at this life-joke.  Watching his painful struggle for every inch of territory crossed, charting his daily deterioration, pains me into my own sadness and frustration and growing discouragement.  It just is no fun to watch a loved one march steadily toward the end of life.  The beginning of life brings an entirely different set of challenges, which most toddlers handle with a combination of cheerful enthusiasm and intense determination.  I invited two-year-old Lila to help me start the cherry cheesecake by crushing graham crackers inside a zip-loc bag, pounding them with our fists and grinding them with a rolling pin, a smile playing on her whole face from the unanticipated joy of harmless destruction.  Lila, and her parents, and my parents, and our neighbors (and myself) vastly enjoyed that cherry cheesecake.  I felt pleased with the culinary triumph, though besmeared with the butter in the crust having leaked through the seam of the false-bottomed tart pan and puddled smokily in the bottom of the oven for me to wipe up at night when I was too tired and never wanted to see another cookbook or dirty mixing bowl again.  But that weariness will have worn off by tomorrow, and soon I will bake a tarte citron or soufflé au chocolat, which we will all enjoy a bit too much.

French chocolate soufflé from Julia Childs.

Courage at Twilight: His Shuffling Feet

At various times of the day—like 6:30 a.m., or 9:30 a.m. on a Friday when I work from home, or noon on a Saturday when I am cooking apple cinnamon oatmeal—I hear that shuffling across the floor, one drag longer than the other, and the other more marked than the first, each a pull and scrape across the carpeted floor upstairs: I hear them from the kitchen downstairs, like short fingernails raking a blackboard, like a breeze sighing through bare winter branches, like a phlegmatic chronic cough, like Marley’s chain of evil and despicableness but not of evil and despicableness rather of righteous cheerful painful endurance and enduring every hour of every day of every year into 90 years and of refusing to give in and of fighting to give and to give, to give out energy and love and forgiveness—to let go of anger and pain and absurdity—to give away one’s remaining sins and stubborn imperfections. I laud the man who owns that shuffle, who owns those twisted falling swollen aching feet which make those whispering shuffling sounds.  Mom slips on his socks in secret: he does not want his horrid—he thinks—and helpless feet to be seen, to be exposed and known.  And I hold my breath and tense my whole body hoping those feet keep on shuffling across the uneven floor, praying those feet do not stop their shuffle in trade for a fall and a crash and an end.  I have never shuffled my feet, yet, though my shuffling soul has dragged itself whining but unpretentious through much of its mortality, vertical and moving, weak and slow—moving.  My direction is what matters: my trajectory: my desire’s focus.  You and I, we keep on shuffling.  He shuffles perseveringly on.

(Image by stich78 from Pixabay.)

Courage at Twilight: A Bucket of Chocolate Fudge

Word circulated that a neighbor was moving and for the men of the church to report at the neighbors’ house on Saturday morning at 10.  Mark is a family practice physician who has treated Mom’s and Dad’s posterity for two decades since their retirement, and Julie has a PhD in nursing and works with sexual assault victims and law enforcement agencies.  While 20 other men grunted over boxes and furniture, Julie set me to work wrapping dozens of framed family photos in protecting plastic.  I started with a portrait of the young couple with their first child, a laughing toddler, and progressed through the family portraits as more children joined the family, which grew to a unit of ten souls, always smiling, huddled with mother and father, and growing again to welcome spouses and new laughing toddlers.  Seeing the photos brought me happiness for them.  But a part of me mourned that I will not have what they have—my family photos will be without father or without mother.  Though we are devoted to our children, we are inexorably apart.  I have delightful family photographs from earlier years as our family grew, but they are incomplete since 2015.  “It is what it is,” I commonly hear from people coping as best they can with their particular set of life circumstances.  I frequently acknowledge to my staff that “the facts are what they are”: I can choose only what to do with them.  A corner room in Mark’s and Julie’s house was piled high with items slated for the local Deseret Industries thrift store.  In one corner sat a sleek black 27-inch flat-screen television, in good condition.  I had been looking for just such a television for Primus, who had only an old gray 10-inch TV as deep as it is wide.  As a man picked up the television to cart it to the waiting truck, I quickly asked Julie, “May I give this television to my disabled friend who has practically nothing?” telling just enough of his story to convey the need.  Primus came to this earth with a form of muscular dystrophy that overdeveloped his brain’s left hemisphere and underdeveloped the right.  He is brilliant at absorbing and discussing books on history and politics and religion and biography, having read over 5,000 hefty books, but he cannot use a can opener.  And he is frequently bullied.  Primus met and befriended me one day, and we have enjoyed long discussions over pizza dinners since.  The nursing professor welcomed me to take the television for Primus.  And Primus was very happy to receive it.  I moved the tiny old TV, on which he has watched his movies for a decade—the characters’ heads must be all of an inch wide—and set up the “new” TV.  The DVD player began Robin Williams’ Jumanji in an instant improvement to Primus’ quality of entertainment life.  I walked Primus through the remote-control functions and left him to enjoy his movie.  In church the next week, Mark handed me a small tub of dark chocolate fudge and a card from Julie signed “With Gratitude” thanking me for wrapping their many family photos, so rightly precious to them, and I felt equally grateful for the enriching experience of helping and being helped.

The tiny old TV, next to a larger nonfunctioning derelict.

Ready for the big-screen!

Courage at Twilight: Vegetables Come in Threes

Though Dad is newly mobile at the grocery store, I stick with him to help open the produce bags and reach for the fresh produce in the higher bins.  “We don’t need cauliflower,” I mentioned.  “We have two at home already.  Same with spinach.”  I left him at the butcher counter, free to exercise his whims, and tooled through the aisles, quickly crossing items of my list.  Herbal tea.  Chicken stock.  Frozen peas.  Strawberry jam.  We met up at the check stand, where he told me that every time he stopped to look up at a shelf, another customer asked him, “Can I help you reach something?” or “Can I get something for you?”  While I thought about how many shelves are still inaccessible to persons in wheelchairs, he thought about the kindness and goodness of most of humanity.  Danny helped us bag our multitudinous groceries into the motley assortment of reusable sacks, and asked cheerfully, “Can I help you to your car?”  Seeing how happy he was to help, though I did not need his help, I said, “Sure, Danny.  Thank you very much.”  He took my cart while Mom and Dad leaned heavily on theirs, and began loading the bags into the faithful Suburban.  “You have a great day!” Danny cheered as he took off with our carts.  In the car, we remarked on Danny’s cheerfulness and friendliness.  He lived his life with a mental disability, but did not let it slow him down or darken his day.  We discussed how this Smith’s grocery store welcomed disabled employees, and how they shined and flourished there, brightening our day and easing our effort, adding to the pleasant environment at the store.  After I carried the reusable bags to the kitchen, Mom and I unloaded the groceries, and I noticed a new head of cauliflower and another carton of baby spinach.  It seems that at the Baker house vegetables come in threes.  Time to get cooking.

(Photo from Smith’s Facebook page, used pursuant to the Fair Use Doctrine.)

Courage at Twilight: Motorized Shopping

After Luana’s chewing out, Dad agreed to use a motorized shopping cart at the grocery store. He took to it naturally, like a soaring eagle riding an updraft above the wilderness far below—a bit too dramatic?  He took to it naturally, like an earthworm in moist dirt.  Instantly my stress levels have fallen off, since I do not have to worry from moment to moment when his strength will give out and when I might find him splayed on the floor in the cold cereal aisle waiting for an ambulance.  And his own distress has diminished, being able now to enjoy the shopping experience.  In fact, he may be enjoying it too much.  While I use my shopping list to target exactly what groceries we need, he glides leisurely down each aisle dropping into his basket whatever tickles his whim.  In checkout lane, Luana stated more bluntly than she meant, “I see you obeyed my orders.”  He smiled up at her from the driver seat and changed the subject: “Aren’t these eggplants beautiful?”  Dad rode his cart all the way to the car door, happy and with a little energy left, instead of the customary staggering and leaning against me and gasping, “I’m not going to make it, Rog.”  Life just got better for us both.  The only problem is that we have a month’s supply of fresh spinach.  But I am not complaining about the chocolate pudding cups he snuck past Mom, or the yogurt pretzels she snuck past Dad.

Courage at Twilight: Quotidian

Quotidian: a word embracing that collection of ordinary and mundane activities and events which one experiences on a routine or daily basis.

“Here you are!” Mom exclaimed as I entered the house after work and sat with her and Dad in the family room.  “Tell me about your day?” I invited.  Mom recounted how, the day being cold but sunny and bright, she and Dad had decided to run some errands.  She drove her Subaru with Dad to pick up her newest needlepoint from the dry cleaner where it had been blocked, then to take it and three other newly-blocked needlepoints to the frame shop and selected frames—they’ll be done in about a month—then to the Burger King drive-through for Impossible burgers and fries and Diet Cokes, and while waiting for their food watching as police officers from three patrol cars placed a man in handcuffs and searched his car in the Burger King parking lot, then came home and fell into their recliners to watch NCIS and eat their Impossible burger meals.  “We’re pooped!” she exclaimed.  Mom then reminisced about Lynn Freeman from her University of Utah days who was a good friend and who had dwarfism and who was on the university swim team and who became a first-rate painter—I have admired his two paintings on their walls for five decades—Lynn gave her one painting as a wedding gift in 1962.  I told them a bit about my work day, and the new book I’m “reading” during my commute: Leadership, by Doris Kearns Goodwin, about the qualities that made Abraham Lincoln, Teddy Roosevelt, Franklin Roosevelt, and Lyndon Johnson such pivotal leaders in American history, being connected in a line of admiration and mentorship back to George Washington.  As stood to go to my rooms, Mom told me they had just ten minutes left of the last episode of the last year of 18 years of NCIS.  She owns all 18 seasons on DVD.

Pictured above: Still Life, by Lynn Freeman.

Pictured below: Scene of Old Park City, by Lynn Freeman.

Courage at Twilight: Mobility Strategy

I sat down with Mom and Dad recently, and asked Dad if we could discuss a plan to preserve his mobility for as long as possible. Far from defensive, he seemed grateful for the discussion: he and Mom know that him losing his mobility will dramatically affect quality of life for them both.  After our discussion, I typed and printed our Mobility Strategy, in big blaring pitch, and stuck it to the refrigerator with a magnet.  A day in the hospital, the Christmas and New Year holidays, and family celebrations interrupted some elements of the new routine, like going to the gym.  Other elements we started immediately.  I do not badger Dad about drinking water, for example, but every time I pass his chair, I hand him a bottle of cold water.  My message is clear.  And, to be fair, I hold my own water bottle even as I hand him his.  (Water intake can reduce edema.)  Here is our Mobility Strategy.  I will let you know how it goes.

  1. Stationary Bike. Ride the bike 6 days a week, for 30 minutes each ride.
  2. Gym. Go to the gym 2 days a week, weather permitting.
  3. Leg Compressors. Use the pumping leg compressors when reading at night.
  4. Walker. Use the blue walker between family room, kitchen, and dining room, as needed.
  5. Cane. Keep the “walking stick” handy for short treks in the house or to the car.
  6. Compression Socks. Order.  Wear.
  7. Elevate. When sitting, keep legs elevated.
  8. WATER. Keep several water bottles cold in the fridge.  Sip all day.

(Image by Willfried Wende from Pixabay)

Courage at Twilight: Weddings and Wheelchairs

Some days are unabashedly victorious and joyful. They need make no excuse for their happiness, and deserve their delight.  One recent glorious day was my son Caleb’s wedding day.  He and his wife Edie found each other after years of mutual adventures shared by family and friends: rock climbing, kayaking, canyoneering, hiking, mountain biking, and missionary service.  My heart believes in them individually and as a couple, that they can be happy together for the long haul through life.  Caleb’s mother and I joined peaceably in the celebration of our son’s hope and happiness.  Not long ago he was a chubby grinning toddler—now he is a giant with as big a heart.  Mom and Dad, 86 and 82, were able to attend the wedding ceremony, pushed in wheelchairs by my sister Sarah and her husband Tracy.  The marriage was solemnized in the Jordan River Temple, of the Church of Jesus Christ of Latter-day Saints, and we took hurried pictures in a sunny 25-degrees.  The wheelchairs were wonderful tools for access and ability, and at the same time ominous portents of things to come.  My thoughts about marriage are tender and wounded and fearful and hopeful.  I want so badly for the marriages of my children, especially, and my friends and neighbors—everyone—to succeed, to be joyful even, knowing the disruption and agony of that particular failure.  What matters today is that Caleb and Edie are happy together, and they are determined to work with each other and for each other to keep it that way.  I feel so very happy for them.  And how content I am that Caleb’s still-living grandfathers and grandmother could join in the celebration, from the wheelchairs that made that joining possible and even comfortable.  Here’s to good days.

Courage at Twilight: Handicapped Parking

What a blessing is the handicapped placard hanging from the rearview mirror of the faithful Suburban.  I tend to quick judgment when I see someone my age and looking just as healthy occupying a handicapped parking stall.  But I try to turn that emotion into gratitude that I can park close to the store for Mom and Dad.  With me driving, they scan the parking lot for the nearest best blue-signed pole.  On our first grocery store outing, I pulled neatly into the stall, the passenger tires perfectly parallel and close to the cart-return curb.  But the car was so close to the curb that Dad couldn’t get out and nearly fell.  So now I look for the van accessible stall and turn wide into it, the driver tires in the hatched lines, with plenty of room for Dad and his shopping cart to maneuver.  The three of us form a slow-moving line crossing the drive lane into the store, me in the front waving thanks to the patient cars, and Mom and Dad following—a kind of gaggle in reverse, with the gosling in the lead.

 

Image by Clker-Free-Vector-Images from Pixabay

Courage at Twilight: My Friend Primus

I met Primus Butler in 2007 as he walked 20 miles with a cane across the Tooele Valley, and we became friends. Primus was born with a form of muscular dystrophy.  As he explained to me, the left side of his brain is highly developed, while the right side has the faculty of an eight-year-old.  Thus disabled, he reads voraciously, completing his five thousandth book this year.  And I’m not talking Hardy Boys, but long and complex works of non-fiction, like Chernow’s Alexander Hamilton.  He rates and lists every book—a select few he finds “indispensable.”  He can discourse for hours about history, politics, biography, religion, and world civilizations.  He earned a degree in Bible and Christian Education from Central Bible College in Springfield Missouri.  And he is a writer.  His first published book is entitled, Heroes of Hope, a collection of 52 biographical sketches of men and women whom Primus considers to have “changed the world by daring to hope.”  (See the Xulon Press bookstore.)  Mom and I each bought a first edition.  Once every month or two I take pizza or fried chicken and Coke to Primus’ house to catch up and talk about whatever interesting subjects cross our minds.  Primus does most of the talking because, well, he knows most of the information.  I called him to tell him I had moved from the valley and would not be able to see him as often, but that I would stop by from time to time.  He did not betray any sadness.  But we have become friends, and I will keep in touch.  Primus is preparing his second book for publication: 52 sketches of his Heroes of Love.

Assault with a Deadly Weapon

Assault with a Deadly Weapon

Well, children, that was my very first trial.  Assault with a deadly weapon.  What a disaster!

*  *  *  *  *

“Here are your cases for the week,” the secretary sighed, bored.  “You have a trial today.  Have fun.”  The other prosecutors cheered when I was hired because hundreds of their cases shifted from their desks to mine.  I was so new I had to ask directions to the courthouse.  I drove my grandma’s 1970 v8 Chevy Nova—it purred in idle and roared on demand.

I first saw that first case on the day of trial. Continue reading

Half the Student Body

Half the Student Body

“If we had known the severity of your handicap, you would not have been admitted.”  That is what the law school averred, in 1960, when he was wheeled into class – speaking intentionally in the passive, because he could not wheel himself, nor could he write or type, turn the pages of his textbooks, raise his hand in class, feed himself, or use the restroom.  “We don’t have the facilities for you.”

Our anger was a fury sparked by profound injustices.
And with that rage we ripped a hole in the status quo.

But having arrived somehow at the school, he kept rolling on.

I call for a revolution that will empower every single human being
to govern his or her life.

Roommates hoisted him to the floor and turned on the shower so he could roll around to bathe.  Women gathered at his door each morning to greet him and push him to campus.  Law students took long notes longhand, holding them up for him to memorize one page at a time.

Disability is an art.  It’s an ingenious way to live.

At the phrase “I need to” Nelson took him to the restroom, lifted him from his chair, lowered his trousers, clasped him from behind to hold him up at the urinal, or set him on the commode, then tidied and dressed him and took him back to class.

I am different, not less.

Sitting at a study table, when he sneezed from a cold, his head flopped over and hit the table with a bang.  He lifted his head just in time for another sneeze and thump.  A clang every time.  One could not very well hold his head all afternoon in anticipation of a sneeze.  The sneeze simply erupted when it wished, with a heavy clonk on hardwood.

I’m already healed.  Just because I can’t walk doesn’t mean I’m not whole.

He graduated from college.  He slogged through law school.  He was their friend, and they were his friends.  They helped him: half the student body.  He ennobled them by inviting them to join him on his journey.

When everyone else says you can’t, determination says, YES YOU CAN.

A student in a wheelchair, whose name I never knew.  He graduated from that law school where they tried to tell him No.  He became an attorney in the U.S. Patent Office in Washington, D.C.  And he married a lovely girl.  And he fathered dear children.  And he lived a life full and long.

Alone we can do so little.  Together we can do so much.

Quotations from these Powerful Able-Disabled:
-Judy Heumann
-Justin Dart
-Neil Marcus
-Temple Grandin
-Ed Roberts
-Robert Hensel
-Helen Keller

(Image of Stephen Hawking by Gordon Johnson from Pixabay)

Roger is a municipal attorney, homebody poet and essayist, and amateur naturalist.  Roger is the author of Rabbit Lane: Memoir of a Country Road and A Time and A Season.  Rabbit Lane tells the true life story of an obscure farm road and its power to transform the human spirit.  A Time and A Season gathers Roger’s poems from 2015-2020, together with the stories of their births.  The books are available in print and for Kindle at Amazon.  See Rabbit Lane reviewed in Words and Pictures.

Just Like That

Just Like That

Not one prosthetic leg, but two—two metal legs where shins bones had been, fibula-flanked tibia, and metal feet filling running shoes laced tight and carrying bone and muscle and steel around the gym.  I did not pity him, but I did pity him—I couldn’t help feeling sorry that something violent had taken his legs, his shins, his ankles, his feet.  It could have been an improvised explosive device disguised as a cardboard box along the side of an Iraqi highway.  It could have been a land mine in Afghanistan.  It could have been a pickup truck rolling and rolling cab-crushing rolling down an embankment into cattails and reeds.  My curiosity couldn’t help but wonder.  He moved down the line of upper-body machines, hip flexors lifting metal in a slightly mechanical gait.  Men—guys—simply do not speak to other men at the gym, except for the group that ripple and strut and those that come as friends and spotters, for fear perhaps of misunderstanding or offense, or to project a cool stoic toughness, or to avoid the embarrassment of slack-muscled bald-headed types like me intruding on their pounding blue-tooth buds.  I did finally figure out a way to be friendly without being weird, playing to vanity by asking for tips for this muscle or that, and usually they were friendly, except for one hulk who sneered It’s all in the genes… which I guess meant I owned unfortunate DNA.  But asking the man with carbon-metal legs for tips would be an obvious ruse for selfishly satisfying a shallow curiosity.

Grandpa Charles had worked in the vast shunting yards of the old Rio Grande, getting cars where they needed to be, cleaning, inspecting, greasing, working levers and switches and leaping over couplings and tight-rope-walking tracks and a general hopping about, with frequent reminders that steel is unforgiving, until that day an inattentive engineer lurched a car and crush-killed Grandpa Charles.  Jesse lived alone for long decades after.  And the grandkids never knew Grandpa.

I walked up to him anyway, taboo and all, because I refused to be afraid of being friendly, and I said Hi and told him I think it’s awesome you are here living your life and that I was not asking him what happened, but I’m sure you suffered terribly and I’m sure it took courage to walk again and live again and choose to be strong and fit and social and I admire and respect your strength in adversity and he was nice and I felt happy and relieved and he told me he had been working in the railyard at an industrial depot that used to be an Army depot when he met a spiteful unforgiving train that lurched at him and his legs were gone just like that but he didn’t die and he decided to live again and I told him I would try to do the same when life got hard for me, and he said Nice to meet you, too.

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(Image by PublicDomainPictures from Pixabay )

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Roger is a municipal attorney, homebody poet and essayist, and amateur naturalist.  Roger is the author of Rabbit Lane: Memoir of a Country Road and A Time and A Season.  Rabbit Lane tells the true life story of an obscure farm road and its power to transform the human spirit.  A Time and A Season gathers Roger’s poems from 2015-2020, together with the stories of their births.  The books are available in print and for Kindle at Amazon.  See Rabbit Lane reviewed in Words and Pictures.

Teasing Daddy’s Ear

Teasing Daddy’s Ear

I have been watching a man at church, sitting in his cushioned pew.  His child sits belted in a wheelchair because she cannot use her legs at all and would flop to the floor if unrestrained.  She is motion, her arms and hands fluttering around and her head wagging and her tight long ponytail swishing violently as if warding off some invisible and pestering thing. Continue reading

Vales and Shadows

20150522_193352

I listened, straining to understand, as the young man struggled through a severe speech impediment to deliver his brief address from the pulpit.  Sitting in my regular church pew, I admired his courage.  Would I have the courage, I wondered, to face a congregation and speak, knowing that I could not speak clearly?  The strength of his conviction carried through even if the words of his message were garbled.  Later, staring at the night ceiling, I imagined him reciting Psalm 23, feeling his vale of sorrow, and taking comfort in his strength, his comforter, his shepherd.  And I imagined the response of the rapt congregation.  Then I wrote Psalm 23 as he may have recited it, not in derision, but out of utmost respect for the strength of his courage and conviction.

VALES AND SHADOWS

Tha Laws ma shepr;
Ishl nawan.
He make me to ladan
in grin pasht:
He led besa sti was.
He sto mso:
He lead me in pa righchne
foris nem sek.
Yeah, though wa valla
shada de
I feena evil:
for Thar wivme;
Tha ra an tha staff
they comfme.
Tha prepa taba fome
in prence ma enmy;
Tha noin ma hea voil;
ma cup runova.
Shu good mercy
fo me all day mlife;
and I dwell nouseof Law
fever.

(loud clappings . . . happy smile . . . weepings)