Monthly Archives: June 2019

The Politics of Pain

The second essay for which I ever got paid carried the dubious title of “The Politics of Pain”.  At least, that’s what I remember, though it might have been, “Pain as a Virtue”.  In it, my fifteen-year-old self grappled with the idea that without pain, we could not experience pleasure.  The editor of the Christian Board of Publication magazine for which I wrote the article changed the word “pleasure” to “happiness”, reasoning that the P word might be a little too racy for their religious market.

In the intervening years, I’ve had more than my share of pain-wrangling, pain-explaining, pain-coping, and pain-avoidance.  I had been given two regular prescriptions for pain by the time I wrote that article.  My neurologist gave me Valium, ostensibly to relax the muscles which he thought might be the major source of my discomfort.  On the female side of body functions, I experienced extreme menstrual cramps back then.  For that malady, the same OB-GYN who would eventually cause my mother’s premature death prescribed Darvocet.  

A college friend sat with me one night while I strove to break the Valium habit.  Darvon eventually yielded to stronger stuff.  In the decades between college and my late fifties, I attempted to quell the neurological and muscular pain with Percoset and Vicodin.  I’m a survivor of the prescription drug epidemic.

As a result of a life-time of dealing with pain, I’ve come to loathe the medical pain scales, starting with “on a scale of zero to ten” and including the simpering series of happy-to-sad faces which apparently signal a nod to the numerical stupidity of asking a chronic pain sufferer to imagine how zero pain feels.  I reject all of those.  My pain scale ranges from, “I haven’t killed anyone today” to a vivid memory of my mother’s long, slow, agonizing march to death from metastasized uterine cancer (cue the ‘Why on God’s Green Earth did an OB GYN give Premarin to a decade-past-menopausal woman, when Premarin even in 1984 was known to aggravate uterine cancer?)  Is the pain on any given day worse than an unsplinted leg with 32 breaks being dropped from an examination table by a careless technician?  No?  All good then, hoist those big-girl panties and get to work.

This morning, I completed a form for a new physical therapy outfit.  I requested that my (also new) neurologist order a course of physical therapy to get me back on track after a tough winter.  My legs protest an added twenty pounds.  Though I’m slowly working it back off, I need to gain some momentum with a rebuild of stamina.  Hence, the PT.

But:  there’s that pesky pain scale.  “On a scale of zero to ten, with zero being no pain and ten being the worst pain you’ve ever felt, where are you today?”  Uh, what?  “No pain”?  That does not compute.  I have never, not once, ever, in my entire memory, had a day without pain.  And what is “the worst pain I’ve ever felt”?  I got hit by a car and thrown three stories into the air, crashing down on the  hood and smashing into the windshield.  I have a vague notion that the pain of that moment might have been intense, along with the pain when I hurled eighty-two feet forward and crashed onto the roadway.  But — then — the sight of my mother’s stretched skin and the incoherence of her wail — is that a ten?  I’m thinking so.

On a scale of Nirvania to Bosnia, I’m somewhere in between.  I haven’t thrown a chair through the window but I have this sneaky suspicion that it might be satisfying.

The physical therapy billing lady called me yesterday to explain that I haven’t met my deductible yet, so that the first few visits at least would be out-of-pocket.  I knew this already but thanked her.  She told me what the cost will be.  I replied that I had been disabled since age two and had had a lot of therapy, and I felt their prices were very reasonable compared with other companies.  She exclaimed, “Oh, if you’re disabled, just get Disability to pay for it.”

I let a few minutes of silence fall into the phone line.  I didn’t understand at first, and when I did, I grappled with my reply.  I did not want to disparage people who apply for state or federal benefits based upon their disabilities.  I’m just not one of them; I can work, so I do.  I finally said, in a gentle voice, “Ma’am, I’m not on Disability, I work full time.”

She gasped, “Oh, you do?  Why?”

The politics of pain rear their ugly head at times like this.  I had to squelch my natural proclivity to ask her why she works full-time, and to opine that our reasons might be similar.  “To pay my bills?  For personal satisfaction?  To do good in the world? To serve a purpose greater than myself? Because I want to have nicer things than I might otherwise be able to afford?  Not your damn business?”

I said none of these.  I let my stillness wrap itself around the moment, then inquired if she needed any information that she didn’t have.  She said no, and the call ended.

Then I came home and read the questionnaire, with its pain scale, and its question about who attends to my normal daily needs, such as dressing, for me.  I put my pen down and paced around the tiny house, a rather unsatisfying circuit which I had to repeat four or five times to control my exasperation.

Back  when I was married to a man whose main mode of room-to-room transport had two large wheels, I once accompanied him to the airport where he had a flight for a business trip.  As we stood saying our goodbyes at the gate, the attendant said to me, “Will your husband be taking his wheelchair on the plane?”  Dennis and I looked at each other; he must have sighed.  I know that I did.

I told her, “I don’t know, let me ask him.”  Turning to Dennis, I said, “Dear, the nice lady wants to know if you’re taking your wheelchair on the plane.”

She got the message.  She had assumed that because he was disabled, he couldn’t make these choices for himself, or wasn’t able to articulate them.

I’m not sure how to make the connection between the inanities of the pain scale and the insult of the gate attendant’s assumption about my husband.  They seem to fall within the same category of aggravations, about which I know that I spend too much time trying not to moan.  But dagnabbit.  Just once, I’d like to feel that zero-no-pain category; and just once, I’d like the paperwork to let me write a paragraph about how it feels to never sink below the fierce level of what a person without chronic pain might consider unbearable.  

I didn’t use the pain scale on these forms.  Beneath the grid, I wrote, “This scale has no relevance to me.  Some days the pain is bad.  Some days the pain is worse.  Every day, I get myself out of bed and live my life, because I will not let pain win.”

I’m not sure I can give that a numerical value.  Not on the decimal system, anyway.  Maybe I can translate it to sound, or color, or chaotic green blips on a computer screen.  In the meantime, I’ve got chores to do, and a twenty-minute drive to Lodi for that therapy appointment.  Wishing you all a lovely Friday, and much joy, I remain, Very sincerely, your #MissouriMugwump.

It’s the seventh day of the sixty-sixth month of My Year Without Complaining.  Life continues.


The Abandonment of Grief

Even as I strive to move forward in my #journeytojoy, I still wear an enormous shroud of grief that I have not been able to shake.  Grief sours the purest fresh milk.  It draws the staunchest mouth downward to a grimace.  Enough grief can collapse broad shoulders and send tremors through strong muscles.

In my work with abused children as a guardian ad litem, I explored the impact of trauma on their neuro-biological development in an effort to guide my interactions with them.  I learned that trauma, especially early in life, can send our neuro-pathways in directions not originally intended.  We literally become different persons than we would otherwise have been.  Dr. Christopher Wilson gives powerful workshops on this subject.  I’ve linked to a page with his work here.

In exploring this research as part of my Continuing Legal Education, I learned that my own psyche probably sustained terrible damage during my childhood which later life experiences deepened.  I cringe at the memory of  loved ones snapping that I needed professional help as the door slammed behind them.  Likely that would have contributed to faster healing than I’ve managed on my own, though as a client-turned-friend once said, “I don’t ‘do’ therapy”.  Some people respond to the guidance of a psychologist.  Others of us, for whatever reason, can’t partake of that type of dialogue — by nature, by tortured nurture, or by dint of our psyches however twisted you might find them.  We slog along, doing the best we can, finding our path to wholeness with slow, stumbling steps.  We lose people by that process, I’m sure; but there it is.  All the more do we appreciate the ones who persevere.

I recently stumbled upon some poetry which I wrote during a dark year of my life.  I had suffered horrific losses.  I could barely breathe most of the time.  I worked as much as I could to distract myself from the mourning which I desperately wanted to forestall.  Eventually, everything crashed around me and my dark year became a half-decade of despair.

At the beginning of that time of my life, as fate would ironically dictate, my son had brought nonviolent communication to my doorstep.  “You need this, Mom,” he urged.  I read the books; I watched the tapes; I tried to get my mind and my mouth around the words.  I endured the hostile reactions of people to my halting efforts.  I had been warned by the master.  The creator of nonviolent communication, Marshall Rosenberg, cautioned that people would hurl insults at us.  “They’ll disparage what they call your psycho-babble bullshit,” he said in one particularly prescient passage.  

I let my lack of progress daunt me.  I lapsed back into a stumbling half-formed version of NVC, which at its essence, forswears blame, shame, and judgment.  Lately, though, I’ve felt the calmer wind of a gentle sea.  I’ve taken the message back into my heart.   

At the same time, I hauled the ugly, rigid kernels of pain out into the open air.  I no longer wait for anyone  to acknowledge the damage that they inflicted.  I know what happened.  The give and take of life does not demand that I parse responsibility.  Is that forgiveness? Or something like it?  Perhaps.  The recovery can go by any name and still be splendid.

The morning sun dawns full; and duty calls.  I started this passage intending to post one of those old sorrowful poems.  That no  longer seems appropriate.  Instead I’ll find a photo of some loveliness from my new surroundings.  I’ll leave you with this thought:  Wherever your feet stand in your own #journeytojoy, I hope you find the strength to keep walking.  Look forward.  You’ll see me smiling as I wait for you.

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

A shot of the back side of the tiny house community in which I live. My house sits on the right side of this frame.

Thinking about not complaining

So, I’m going to freestyle this by voice to text. I’m lying on my daybed, with the windows open and three fans staged throughout my tiny house. It is comfortable and cool despite the fact that it got to 85 today. It’s 79 in the house or maybe lower by now. Humidity did not get above 40% in the house all day, which I know because I have a cute little gadget which tells me the high and low temperature and humidity in a given 24 hour time span. I’ve eaten a funny dinner of goat cheese and toast. I have a glass of cold water by my side. I’m on day 4 of a viral episode which I’m fairly certain is what we call, my virus, that is to say HHV-6. I don’t feel very well but on the other hand, like Yossarian in the hospital, I’m not very sick. It could be worse, in which case they could treat me; and it could be better in which case I could go home. Or, since I am home, I would get up and move around and maybe even fold the clothes which have been sitting in the laundry unit since Saturday. Thankfully, they are dry. So I’m lying here thinking about complaining. Or not complaining.

I’m remembering that 21 1/2 years ago I was given 6 months to live by a doctor who died himself within the year. I am thinking of all the diseases that they thought were causing my decline which I turned out not to have. I am remembering Joe Brewer, the doctor who saved my life by explaining that I was just hypercoagulable and I needed blood thinner. I’m remembering my son submitting me for the Luckiest Kansas Citian contest, which I didn’t win but which submission resulted in an article being written about me that got me a lot of business and a fair amount of fame in Kansas City. And I’m thinking about complaining, or, about not complaining.

It’s the third day of the 66th month of My Year Without Complaining. Life continues.

Taken one morning this spring near the tiny house community in which I live.

Eyes to see

A clatter startled me awake just before dawn.  Some sounds cannot be mistaken for anything but what they are.  I lay in the dark thinking about getting out of bed in a few hours’ time, fumbling for my glasses, grunting as I groped around the floor.

I can make my way across my tiny house near-blind, uncorrected.  If necessary, I can light the propane, fill the kettle, see to my morning needs, until my body wakes enough to bend without swaying.  My brain will eventually remember its job, while muscle memory takes care of the critical demands on rising.  But I prefer to have those little frames on my nose, especially knowing, as I have recently learned, how inadequately they meet my current needs.

Eventually, I fell back to sleep.  A dreamless hour later, the first light of the Delta dawn seeped in through the transom.  Birds began their reveille.  I let my hand fall, scooted my fingers across the smooth surface of the laminate flooring, and felt the cool metal of my spectacles.  Gotcha.

 I pulled my twisted body from bed and padded silently across the floor.  I poured water from the Britta into the enamel kettle.  As I waited for it to boil, I stood in the open doorway listening to the sounds of morning.    No particular thought came to mind, except, perhaps, a  deep sense of gratitude that I had survived to see another day; that my eyes, however tired, could behold the delicate flowers on my cactus; and that my heart, however broken, however erratic, still continues to beat.

It’s the second day of the sixty-sixth month of My Year Without Complaining.  Life continues.


The Noises In My Head

I have not been able to distinguish the noises in my head from the sounds of the world around me for several decades.

This can be humorous if somewhat disturbing.  For the last few months that I lived at the Holmes house in Kansas City, I thought my neighbors had undertaken a complete home-remodel.  I finally realized that my brain produced whining saw noises even at times of total silence.  On my little porch last evening, I sat musing about the universality of crickets, until I thought, it’s only six o’clock. . and surely enough, no crickets, just tinnitus.

The phenomenon started in my early teen years.  My grandfather said that my hearing had begun to fail and I would soon need one of the hearing aids that he and my grandmother sold.  An audiologist added to this diagnosis.  He had told me to raise my finger every time I heard a tone.  I dutifully raised one finger time and time again, but he had never started the test.  

I understand that this condition results from a confused brain.  Nonetheless, I enjoy it from time to time.  It rises and lowers, ebbs and wanes.  I have an orchestral soundtrack to dreary days.

Yesterday, I finally got an eye exam for which I’ve been striving since I moved to California.  Unfortunately, the doctor had a lilting Asian voice, the pitch of which fell right in the middle of the range of  the endless chattering inside my brain   Her proclivity to interrupt added to my difficulty following her questions.  She couldn’t wait for my answers.  Once I asked her, very nicely, if I could finish responding.  She replied that she didn’t want to lose her train of thought.  Then she turned her back to me and started clicking through my chart on her computer screen.

I sat back in the examination chair, closed my eyes, and let myself be carried away by the noises in my head.

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