As I sit at the pull-out desk in my inherited antique secretary, a pile of sundry paperwork flanks my computer.  A plastic pouch of computer cords teeters on the heap.  The dish drainer overflows with wooden spoons, pans, and mismatched crockery.  Grease spans the top of the world’s stupidest stove and the prefab butcher block.  The door to the world’s most useless cabinet hangs on its channel.  A box meant for the packing of a present to ship gathers dust in the sitting room.

My hips scream in protest this morning.  A thought crept into my consciousness:  Have I reached the hip-replacement stage?  My last joint job kept me hospitalized for seven weeks.  Lily-white spastic legs resist modifications, even ostensibly  helpful ones.  I realize that medicine has evolved in twenty years, but I have not.  I shudder and cram the demented genie back into its cracked bottle.

I woke at five.  I’ve broken my fast, watched this week’s anti-climactic episode of Top Chef on YouTube, and let the last of three cups of coffee cool on the counter.  My Friday To-Do list holds more tasks than I could accomplish sun-up to sun-down even if I were able-bodied.  I’m vaguely aware that I can’t recall where I put my paycheck.  I’m hoping it’s on the car seat; and that I locked the car when I staggered into the house from an exhausting day.

Exhausting, but gratifying:  I spent three hours reading documents outloud to a blind woman.  Periodically, she or her husband made a small face which signified lack of comprehension.  I stopped to give what explanation I felt that I could without a California law license.  The witness sat to my right, and had a few questions of his own.  All of the queries made sense; some challenged my own understanding of the subject.  The husband kept refilling my water glass as my asthmatic voice rasped ever on.  He served store-bought oatmeal and cranberry cookies.  When we got to the signing, he gently aligned his wife’s hand atop a heavy piece of cardboard near the line on every execution page.  She scrupulously inscribed her full name, including middle initial, multiple times with lovelier penmanship than mine.  We sang her praise as she released a long anxious sigh.

I sat in the evening traffic thinking about disabling conditions and how they define our lives.  I met my second husband in 1997 in a Yahoo chat room.  I asked him to describe himself before he sent a picture.  He said he was a twelve-foot giant.  When the picture came, he captioned it, “Don’t be put off by this, please.”  I studied the image, a photo taken on a sunny day at a seafood shop on a Maine boardwalk.  His apprehension puzzled me until a friend glanced at the computer screen and observed, “Who’s the guy in the wheelchair?”  

I hadn’t even noticed.

If I had to describe myself to someone who wanted to guess how I looked, I’d mention my wild gypsy hair, my crooked teeth, the spattering of freckles across the bridge of my nose, and the extra ten pounds currently clinging to my belly.  I’d pause, trying to decide if I should mention that I walk with a staggering gait.  Nah, I’d think.  They’ll notice that.  If they shrink away in horror, I’ll have my answer to whether we can be friends.  

Last weekend’s encounter with an MRI technician who asked me if my “aide” had come to the appointment with me has left an impact.  When I sit in the driver’s seat of my car, I forget that my “walking issue” has worsened.  I feel twenty, or forty-two, but sixty-five and failing never occurs to me.  Then I step onto the pavement and lurch around the front of the car, hoping my balance will claim itself by the time I emerge curbside.  But I promised my son that I would live to be 103, and I’ve got 37 years to go.  So I’ll haul myself from this chair, find a morning stretch video in the Heart & Bone online studio, and rewarm that cup of coffee.  I’m going to need it.

It’s the twenty-fifth day of the ninetieth month of My Year Without Complaining.  Life continues.

West of home last Friday, on the I-80, I felt the temperature drop 30 degrees.   I turned off the air conditioner and lowered the windows.  The sound of traffic did not bother me as I drove into the City.

A light fog clung to the Golden Gate Bridge.  People strolled in the streets, still masked but with bright eyes above the little strips of cloth.  Music drifted around corners.  Waitstaff greeted customers like friends who had gone to sea and returned with long beards and tall tales.  Children scampered ahead of their parents.  Dogs eagerly gulped water from bowls set on sidewalks outside of coffee shops.

By Saturday, I had grown accustomed to the coolness of the coastal weather.  Surfers mingled on the beach with ladies wrapped in silk shawls.  Fathers lifted toddlers to their shoulders on the Pacifica Pier, wrapping small jackets around their tiny bodies.  I eased myself among them all, murmuring a quiet greeting now and then.  I sat on concrete benches, leaning against the brass plaques that spoke of lives and loved ones lost, remembered by the grief of the living.  I eavesdropped on conversations started in the spring of 2020 and resumed with a seamless casual ease.  Eagerness dripped from the voices of people who had not seen one another since that day, that awful day, when California closed.

From a picnic bench, I watched pairs and clusters of families traverse a sand dune to and from the beach.   Kites floated among the birds on the breeze moving inland from the distant horizon.   The lyric of language drifted around me.   I sat silent and solitary amid the swell of life.    I hovered between sorrow and joy.

Sunday morning I drove north, all the way to Jenner.  I passed picnics, and barbecues, and long lines outside of oceanside restaurants festooned with welcoming banners.  I saw fathers with children, women holding hands, and a thousand radiant smiles.  When I finally got home, I discovered that my gardenia bush, which I have been desperately nursing back to health, had five fragile blossoms on its lower branches.  I stood on my front walk and wept.

It’s the twenty-first day of the ninetieth month of My Year Without Complaining.  Life continues.

Please enjoy this slideshow, which has 30 images.   If the pictures remain stationary, try clicking on one; it should trigger the show to resume its flow.  Thank you.

The walk from the parking garage to the entryway of the building at UCSF to which I went this afternoon took me fifteen minutes and a sufficiently large fraction of my energy that I had to rest on a bench before entering.  Damn damn damn, I muttered, bemoaning the fifteen pounds of unnecessary body weight hugging my middle section.  I do not mean to shame myself, but above a certain poundage, my legs, lungs, and impaired neurology simply buckle.

I drew myself vertical and dragged my sorry feet the last hundred yards.  I showed my “Covid Compliant” hallpass and got a little green sticker bearing the day of the week.  Where do I find the imaging department, I inquired of the attendant.  “Take the garage elevators to the bottom floor and turn right,” she replied.

The garage elevators.  The elevators from which I had emerged fifteen minutes before collapsing on that cold bench in the breezeway off Parnassus Street?  

The very one.

The reverse course took me seventeen minutes, mainly because I stopped on yet another bench to regain my composure.  On the bottom level, I gave my name, date of birth, and shoe size to a young lady behind four large pieces of plexi-glass.  When she had acknowledged my appointment, I made a mild statement about being misdirected to the front entrance.  She shrugged.  I made a less mild statement.  She said, “It’s not my job to send out the appointment emails.”  I asked whose job it was.  She did not know. I explained the issue.  She made a face.

 I noticed another clerk eavesdropping behind a partial wall. I invited her to come out and asked if she knew whose job it might be to craft the directions given to new patients via the confirmation email.  That she lifted and dropped her shoulders gave me no shock.  I did not anticipate the voice from the waiting room.  The same thing happened to me, said a blonde woman from behind a flower-print mask.  Then another woman added her son’s experience.  He had walked all the way to the front entrance and back to where he actually needed to be, but the delay cost him the time slot and they forced him to reschedule.

“Look,” I said.  “We’re not complaining.  We’re just telling you, this is a problem and we would like you to be part of the solution.  New patients need accurate information.”

A third clerk had joined the first two.  None of them made even the slightest gesture to indicate their concern.  My two compatriots stood behind me.  Into the silence, the blonde woman said, “Somebody should know why they give the wrong information, and somebody should be able to fix this problem.”  Three on one side of the plexi-glass barrier; three on the other; and a hopeless divide in between.  The silence hung no heavier than my heart.

A little while later, the head of the department talked to each of us as we tarried in socially distant plastic chairs.  By and by, I got my MRI and exited the building.  I slid into the driver’s seat and navigated to street level.  I turned my car south on Highway 1.  I found my AirBnb and dumped my bags.  Then  I took myself to a roadside stop, leaned on the hood of my car, and breathed the heady fragrance of the sea.  I lifted my face to the seductive caress of the evening breeze as the sun spread its molten glow across the far horizon.

It’s the eighteenth day of the ninetieth month of My Year Without Complaining.  Life continues.

Let me start by saying:  “Don’t cry for me, Argentina”.  Oh, wait.  Wrong movie.

Seriously, people.  Last night’s awful hours pale in comparison to cancer, kidney disease, and progressive diseases such as ALS or MS.  One of the goals of this #journeytojoy remains developing a cheerful attitude in the face of obstacles. 

All my life, doctor after doctor has issued dire predictions about my future.  Bedridden by 25, care facility by 35, dead by mid-40s.  During childhood I believed the warnings.   I threw myself into a party life in my late teens and twenties.  I never lacked for prescriptions to take the edge off pain. I worked full-time from a young age so I could afford a good brand of Scotch to wash down the pills.  I cruised into my mid-30s on the edge of total numbness.

The birth of my son in 1991 should have brought me to my senses.  Another twenty-odd years would see me confronting a stark choice:  Pain or emptiness.  With my particular neurological sensibilities, and the limits of modern pharmacology, no middle-ground could be found despite decades of guided experimentation.  Even here in California, with CBD on every street corner, nobody quite knows what to do with what the venerable old Ted Sandow MD noted:  Abnormal bodies behave abnormally.

Don’t cry for me, Argentina.

Seven years and 5-1/2 months ago, I took my last narcotic.  I threw away an entire bottle, stripping off the label and tossing the pills in the safe-return box for proper disposal.  I took myself by the scruff of my neck and abolished the use of spirits as self-medication.  I issued warnings all around to the circle of friends.  Pain changes everything, I told my then-spouse.  But if I can feel pain, I can feel so much else that I’ve been missing.  

My favorite neurologist back home used to caution that neuro-transmission should be regular and rhythmic but mine falls short on both counts.  The resultant misfiring resembles a dodgy transmission in an old Chevrolet.  Signals run round my system, making muscles twitch and my brain stagger.  But again:  It ain’t fatal, people.  Nothing to see here.  Avert your eyes if the spasming sickens you.  My least favorite question at any medical exam?  “On a scale of 0 to 10, what’s your level of pain right now?”  I roll my eyes.  Here’s my pain scale, lady:  “On a scale of getting run over by a car, flying through the air, hitting his windshield, and having your right leg broken in 32 places to watching your mother die a long, slow painful death of metabolic uterine cancer, I’m somewhere in between.”

So there you have it.  Every six weeks like clockwork, I have a wicked ugly night like this last one.  For a day or so in advance, warning zaps cause my legs to shudder.  We kept a calendar for a couple of years back in the 90s, so I know that six-week label rings true.  Nothing has changed in thirty years.  The cycles perpetuate and persist.  Down, up, peak, down, up.  You could set your Roman calendar by the pattern.

It’s a hard row to hoe and harder for outsiders to watch.  The only romantic partner that has tolerated the experience did so from a wheelchair in complete understanding.  Otherwise, I strive to keep my crabby being to itself in the hardest times and only go around others at the high peaks of my ability.   Between times do get lonely.  When my eyes  opened this morning, I dearly wished someone would bring me a cup of coffee.  But five minutes later, I hoisted myself out of bed, downstairs, and into the kitchen where I stretched while I waited for the kettle to boil.

Don’t cry for me, Argentina; for I still have Tara; tomorrow is another day; and as God is my witness, I’ll never go hungry again.

It’s the eleventh day of the ninetieth month of My Year Without Complaining.  Life continues.

Taken last year from the road on which I live.

Yesterday, I drove almost two hours to Knight’s Landing to get my hair done.  I’m not a vain woman.  I’ve actually left salon chairs in anguish because I felt uncomfortable in the spotlight.  I cringe when I think of bad cuts and awful color that I’ve endured because I wouldn’t speak out.  I just don’t feel worthy of the kind of primping and pampering that most women take for granted as their due.  

So when I find a hair stylist who makes my hair look good and my heart sing, she’s worth a two-hour drive.

Believe me when I tell you that I dearly long to accept my own value.  Plenty of women friends have urged me to see myself through their eyes.  But the combination of whatever turn my psyche took along the way and the American social culture with its predefined notion of physical virtue stymies any hope in that regard.  When my body weighed next to nothing, I still found myself ugly and unlovable. In weightier times, I accepted that fat prohibited affection.  Through all of the roller-coaster poundage levels, the annoying limp, tired sagging, and gnarled limps announced stark differences that a good hair cut would never overcome.

I don’t know if men experience such angst over their bodies.  I assume my own special issues compound the situation.  I realize that I should be over all this by sixty-five.  Yet here I stand:  Still wishing, as the character Brenda in the sit-com Rhoda once declaimed, that someday, somewhere, someone would think that I am pretty.

My current stylist could also be considered a friend.  I met her three years ago in Lodi.  I had steeled myself and scheduled a pedicure, which for me serves the necessary purpose of footcare which I cannot accomplish for myself.  The technician grimaced when she saw my crippled toes.  She actually backed away  She elaborately applied gel to her own hands, then donned gloves.  I should have left.  Instead, I endured her rough ministrations.  You see, as a person with fairly severe spasticity, tending to my own feet poses genuine difficulty.

Afterwards, I asked the receptionist about available stylists who might be qualified for a bit of facial work.  The lady introduced me to Christina Sandoval Sorensen, who settled me in her chair and cheerily asked how my pedicure had gone.  I’m sure the resultant tears must have shocked her.  In whispered tones, I described the pedicurist’s behavior.  Christina hugged me; then set about giving me a marvelous treatment — shaped eyebrows, face-wax, a soothing neck massage.  Afterwards, she refused payment.  I left her chair in wildly better spirits than I had assumed it.  She’s been my hair stylist ever since; and I call her “friend” as well.

Christina and her husband left the Delta last year for Knight’s Landing, but they are moving back.  I’m thrilled.  I can’t wait to sit on the dock and share a drink with her; to eat a meal at the local haunt; and to brave the river in her lovely boat.

Christina’s not the only hair stylist to become a friend.   Kelley Blond in Kansas City, who did a marvelous job with my color and kept me in stitches of the merry-making kind, occupies a special place in my bruised and battered heart.  My #journeytojoy still looms before me;  but  these two special women have taken me across troubled waters from time to time.  Yes, they charge for their services though not as much as the hour of therapy that I sometimes feel their ministrations provide.  And I leave their care  with tamed curls,  without grey roots, and smiling.  What more could I ask?

It’s the sixth day of the ninetieth month of My Year Without Complaining.  Life continues.

Christina Sandoval Sorenson does business as Cloud 9 Hair and Make-up, currently situated in Knight’s Landing but soon returning to Lodi.  Kelley Marie Blond owns Lady Luck Hair Parlour and Spa in Kansas City, which used to be on Washington.  DM her on FB for updated location and availability.