Tag Archives: Disability

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.

________________________

(Image by PublicDomainPictures 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.

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)