When I Was A Boy, A Doctor’s Insight Was Law

 

aadoctor

When I was a child and was literally dragged to Dr. What’s-His-Face for an annual check-up (less a check-up and more a ritualistic cadence of tsk, tsk, tsk’s) as he poked and kneaded and cold-handedly fiddled with my . . . which backs away from coldness . . . and shy’s away from evaluation like a cub scout whose self-built car elicits jeers from his Scout Master (who also happens to be his dad).  The snap of gloves and odor of soap which resembled anti-freeze gave the doctor time to compose his subtle and sensitive conclusion:  “He’s too fat and getting fatter and his fat is hiding his . . . which, for sanitary reasons may require the removal of . . . which was when I buckled my Indian Beaded Belt and disappeared until hours past dusk when a neighbor found me shivering beneath the front porch.

That incident was a painful secret which I’ve carried on my back for fifty years and continues to cause retreat when doctor’s or lover’s reach out.  Such a sad burden to carry because of one unsympathetic phrase from a stranger who had no right being a pediatrician.  I often wondered how he treated his dogs.

My mother’s ignorance and prostrating to figures of authority always meant that any run-in with any adult possessing even a pinch more aacopauthority than her resulted in stern and week-long pain.  Just what exactly did these arrogant and sadistic adults possess that was never crossed?  They had been appointed to their position because of educated insight which was never, ever, EVER questioned..

Which, of course, perpetuated a multi-century tradition which has continued even to this day.  Most doctor offices have a small-framed notice somewhere above their “All services must be paid TODAY!”  reminder which reads something like,  “My profession hasn’t been questioned or challenged in three hundred years, so don’t try to be the first today!”  And in you go to be examined, quizzed, and questioned only to receive a prescription scribed in ancient Egyptian and an “order” for physical therapy.

aaangryguyDo I sound somewhat angry?  Of course I am!  Doctors get paid enormous salaries yet complain about the escalating costs of malpractice insurance.  Malpractice insurance exists because professionals are trusted and believed and paid.  And for this degree of faith we get an educated guess of what might be ailing us.

But this is what I’m REALLY angry about: Two doctor’s at Froedert Hospital assured me my brother Rich did not suffer a stroke based on a CT scan.  It was 48 hours later when I insisted they perform an MRI.  Voila’!  A clot in a vein feeding the occipital lobe (responsible for eyesight).  Because of unconscionable arrogance my brother is legally blind while these two doctors suffer NO consequence.  Upon discharge from Froedert, I was told that Rich was totally blind due to A) The Stroke and B) A severe seizure two days later.  I made decisions based upon the information told to me by staff in the Stroke Unit.  And guess what?  He isn’t blind!  Albeit his eyesight has been significantly compromised, but his field of vision is approximately 17″ in diameter!  And the staff at Froedert?

And the worst example of guesstimating occurred this past weekend when Rich suffered a severe heart attack.  The errors in order of aapuzzleddocappearance: A) Someone at the acute rehab facility removed his DNR bracelet, yet never informed the paramedics that he had a DNR order in effect; B) The paramedics, unaware of the DNR order, couldn’t inform the ER staff;  C) When Rich went into arrest they performed heroic measures to yank him back to life including five minutes of chest compressions resulting in several broken ribs and the insertion of a temporary pacemaker to maintain his heart rate (why didn’t anyone call me while they repeatedly beat Rich?  They called me after!)  D) An ICU doctor called me and informed me that the ER stepped beyond Rich’s wishes and now, NOW I’ve got to decide if and when we reverse their . . . their, what . . . their adrenaline infused jump to action?  And when YOU do decide he will . . . be gone.

For nine hours I held firm to Rich’s wish: DNR. And I would honor his wish just like I’ve always honored him. And I aastoplightwouldn’t allow my own emotion, hope, or desire to shake my resolve. I spent nine hours picking up strength like a child picks dandelions. And upon my arrival at his room in the ICU he was semi-conscious, breathing on his own, and occasionally howling in pain as he coughed with broken ribs. The equivalent of The Cuban Missile Crisis was over and Rich, contrary to what the ICU doctor emphatically informed me, was alive, on his own, without my intervention. And even though he’d crossed that line, he’d come back, I think, just so we could laugh at the old, standard jokes as though it was the first time we’d heard them!

And those doctors? The heroic and uninformed professional, and the cardiac-specialized professional made two BIG mistakes and continue to work without consequence for their egregious and painful errors. Alas, that three hundred year old tradition continues.

 

My Brother Rick (aka Dikes, Rich) Condition Post-Stroke

asstroke3Last Thursday, a few minutes past noon, I called my brother Rick in Milwaukee (it had become a ritual of sorts especially while driving), and he answered in an odd tone which gave me pause. He began to complain of escalating nausea to which I urged him to see his personal physician.  He failed to remember his physician or the terrible diabetic wound which almost led to amputation or his two-month in-patient hospital stay. I astroke1told him I’d call 9-1-1 and ask that he be taken to West Allis Memorial Hospital ( policy dictates patients be taken to the nearest hospital). However the paramedics discovered atrial fibrillation (fluttering heart beats) which alternately peaked and diminished and therefore paramedics informed me that they were headed to a critical cardiac unit at St. Luke’s Medical Center.

However, St. Luke’s didn’t have a bed open, so Rick was taken to Froedert Lutheran Medical Center. After tests and a CT scan the ER team began antibiotics to stave off a small area of pneumonia in his right lung.  Rick remained on the general medical floor until the results of an MRI showed he’d suffered a severe ischemic stroke (an obstruction within a blood vessel supplying blood to the brain) in the occipital lobe (at the rear of the skull and is responsible for vision). On Sunday afternoon he was transported to the Stroke Unit (one of just astroke2a few in the U.S.) where he was resting comfortably.

On Monday, June 18 Rick suffered a significant seizure which greatly diminished his short term memory and eliminated the peripheral vision on his right side.  I’ve visited and talked via telephone with him this past week.  The cadence of his speech has slowed, he’s practically immobile, he’s approaching clinical blindness, and finds difficulty in fundamental motor movements like holding a cup.  But as he told me earlier this week, “I ain’t going to be like this forever, you know!”

I’d like to ask that anyone reading this post to consider sending him a get well card.  I’m sure your sentiments would help replenish a hopeful spirit during difficult times.  For those of you who send cards, thank you; for those that haven’t, please reconsider.  Send your cards to:

Richard Didrickson
Froedert & Medical College of Wisconsin
5-NW Nursing Unit
9200 W. Wisconsin Avenue
Milwaukee, WI  53226

 

PAIN

apain

PAIN relentlessly reminds us of life;
PAIN is cruel, brutal, and inhumane;
PAIN cannot be proved nor disproved; much like many religious deity’s;
PAIN is private and personal and corporeal to you;
PAIN is isolation;
PAIN is an absent invitation and then another and another and . . . ;
PAIN strong-arms false confessions and prosecutes the innocent;
PAIN in prison is orthodox especially to insistent innocent’s;
PAIN is torturous;abodypain
PAIN is not contagious;
PAIN is in your head;
PAIN isn’t where you think it is;
PAIN is an expression;
PAIN might be masked by pills;
PAIN if unforgiving is chronic; disbelieved; every second of every minute of every hour of every day of every year of your life;
PAIN when chronic is a life sentence with little chance of freedom like the innocent suspect now inmate;
PAIN is mental, is physical, is reactive, is imagined;apainedemotion
PAIN is a taste of insanity;
PAIN is tangible unlike its abstract converse, painless, which slips by unnoticed;
PAIN alienates us from the painless and yet, PAIN censures the vague conjecture of painless;
PAIN painfully illuminates the oft overlooked pleasure of painlessness.

The Time Spent To Read This Post, Equals The Time You Have To Save Your Life

Back in 2008 when the shit storm incinerated the first 20 years of my adulthood, I made an oath while dragging what’s left of a . . . of a bespoke walking stick through four inches of gray ash – some sizeable went aloft and rode a breeze – only to land in some other year; this oath was directed at loss, or better, surviving loss which is always, always more painful than the combustion of mortality which is hard-wired to flee extinction.

Appointed to this life: Two tiny, perpendicular scratches amidst millions of other’s noting everyone’s start and finish on (what we’d like to believe) linear straight-edge of time. And my time – time as living – a selfish amalgamation of loneliness, caution, exposure, intimacy, maturity, judgement, patience, learning, strife, letters, confessions, achievement, and the likely propagation of another generation or the unlikely dog-eared page noting a dead end by a period placed unerringly after the last letter of the last name annotating The End, A Willful Extinction.  The simple decision to stop production thus beholden to past generations, or, the decision of propagation thus bound to the future.

We’re putting a stop to this tributary of our bloodline; my older brother never purposely or haphazardly discovered the merits of fatherhood, and I, being of the gay-persuasion fell in-love when fatherhood and matrimony were simply off-limits; thusly denying my partner and I any marginal hope to have children.  My partner yearned to have a child, Jack (because I simply grew tired of our constant referral to “It”), but by the time the stork delivered to same-sex households, I, in all honesty, was too old and too tired and too responsible to entertain my partner’s fundamental need to nurture.  My father was well beyond my reach; that life, that engaging and interested life, was at least a decade before I consciously understood that I was bereft of any gargantuan, mitt-like hand to hold.  And that sadness burrowed deep, deeper than any other heretofore denial ever tunneled.  And honesty foretold of my family’s dearth in the health department by my adult-life diagnosis of a mental illness, a disease, not a sickness or an infection or a fever but a disease, not an alien landing, not a vampire, and not a plague, but a disease nonetheless. Mental illness is handled, not treated but handled by this nation’s body politic.  It’s a dispassionate and treacherous handling, like the negotiating cop that placated the felon’s demands until one, perfectly aimed .32 caliber round stops the demands. “They” know how to dilute the alleged discrimination; the mistreatment of patients in county facilities;  blaming us, the patients, for their on-going ignorance and antiquated seclusion as a “well-informed, empathetic, and public safety response” to the irrational and grossly illogical . . . blah-blah-blah. . . Um, hello, hello? (is this thing on?) mental illness is a disease as bona fide as cancer or chronic kidney failure (except mental illness lacks a “celebrity endorsement).

And yet, we’re not alone: patients-in-general have devolved into a 15-minute generic; that is, the disappearance of importance, the disinterest of ailments, suffering, and cause.  Today’s Western Medicine Patient has become an Accounts Receivable entry in the ledger; a doctor’s statistic of efficiency; appointment number 58.  We as patients have been reduced to a test result followed by a prescription or passed along like a troublesome foster child to a series of specialists and more tests and more prescriptions.

It’s a cold and alienating model of efficiency and profit, and we, the patients, the commodity are fought over by insurers and institutions chanting “To Hell With Life!”

“Hopeless Ness” and the Lass “Chance” (a recent chat) for marsh d.

atextingThis is an excerpt from a longer conversation with my cousin who’s been living with chronic pain and fibromyalgia.  This excerpt was of particular significance because it was answering an unasked question which was hidden “between the lines” regarding hopelessness.  If one is faced with 20 years of chronic pain, immobility, mood swings, etc. AND loss of hope what might their next stop be named?

Or is it the end of the line?

LUCY

Hello T. M. . . .,

I’m worried about you. You wrote a great post on hopelessness, are you feeling hopeless?

How can I help….I’m a good listener. You’ve poured your heart out onto the pages, you’ve been through a lot in your life and every one of those memories makes changes in the way our central nervous system functions and in the way the brain functions.

We (all of us who are chronically ill) put a lot of hope in those little pills. Those pills are able to aid you in functioning but can’t fix what has been broken. But, there is HOPE! The hope is within you and, with the help of another human being (not another pill), you can find a sense of peace and understanding.  Then we come to acceptance…..well, that’ll be a whole ‘nother blog.

 

T. M.

Hi Lucy:        
ahopeless
I made a promise to myself when I started this blog that I would be honest in my writing without sounding pitiful. I believe honesty transcends our diversity and therefore many can relate. The problem I have is that I suffer from untreatable maladies (brain, heart) and have recently been plagued by severe shooting pain in my lower and upper right side of my back, sciatica on my left leg, and most recently pain and weakness in my lower right leg. I was compromised with untreatable long-term illness, but then add these perpetual pains and immobility (I’ve been in pain every single day for 10 months): I take a cocktail of pain relief and muscle relaxants which work somewhat, but gastric bypass changes everything. Pardon my expression, but I feel like I’m all fucked up, none of my doctors seem to have the answers, and I am virtually homebound and use a small 3-wheeled walker to move around the house (which I’ll give to Rick when I’m finished with it). It’s almost impossible to have hope when you take stock of your life and all you see is lunacy, suffocation or heart attack, and constant and crippling pain. I’ve asked myself, “Am I really alive? Is this 24 hour ticktock simply doing time for a crime I didn’t commit? The only thing I look forward to is writing my blog. If only I could discover pain relief.

LUCY

I’m so sorry about your back pain….I have been through terrible sciatic pain and understand completely what you’re describing. It IS hard to abackpainhave hope!  What you’re describing is what everyone with fibro describes……many lose hope. Without hope, you have nothing. I was at that point at one time, too and made a plan to commit suicide. All seemed hopeless and I didn’t want to live a life of pain. i threw myself into research and coming to understand what was happening inside of me. I’m still coming to understand what’s happening…..researchers are still trying to come to understand what’s happening.  For 40 years, I went to the doctor, described my problem….he did tests, which all came back as normal. As long as the tests came back normal, there wasn’t a real problem. Thousands of people have gone through this same thing….test after test and all is normal. I was turned away and humiliated by a few specialists who didn’t believe me….no one would believe me. The doctors were trained in medical school that when someone like me comes in….to disregard the complaints….it’s all in her head and she’s making it up to get attention. Talk about losing hope!!!!!
Dr. Oz actually did a show on this a few months back and he admitted this is how the medical field has been trained …..to not take seriously any pain that can’t be diagnosed on a test. And, he admitted that he felt this way, too…..until just 2 years ago. Now, he has come to understand more of what’s actually going on inside of us. I am not alone.

Facebook has been like a miracle for me because I have found all of these other people just like me who have suffered for forty years and discounted, too. There are thousands and thousands of people all over the world who are suffering. The medical profession doesn’t know what to do with things they can’t see on a test!!  You have terrible pain in your back…..surely they must be able to see this pain on a scan. But, no….they won’t see it unless you have a herniated disc, that they can see. That, they can do something about because they can see it.

T. M.

I used to volunteer at The National Runaway Switchboard as a “liner” (the person who answers the call. I decided to continue until my problems surpassed those of the caller. Well, I stopped when Rick got sick and haven’t been back since. I could deal with the long-term illnesses if I could just shake the pain.

LUCY

I have learned so much. I went off on my own and spent a fortune on alternative therapy and a Fibro Specialist that wasn’t covered on my insurance plan. I had to drive 12 hours one way to get to see him….talk about desperate!! But, he helped me gain a semblance of a life back. alternative medicineIt was worth every penny.

What I’m trying to say is this….the doctors don’t have all the answers. In fact, they don’t have many of the answers. There is much more you can do to help alleviate the pain.

One thing I suggest is seeing a Pain Specialist. Jeff has been suffering with debilitating sciatic pain for some time. He couldn’t walk without his walker. He was losing hope.

He went to see the pain specialist who injected the spine…….because the injections helped somewhat, the doctor knew that a more radical treatment would work. He did the treatment on his sciatic nerve and it was a MIRACLE. He was able to walk, to stand up straight and to begin to enjoy life again.

Just the value of having one other person understand what you’re going through and to be able to relate with compassion and empathy is very healing.  I’ve seen it again and again as I talk to people. They all say it . . . empathy, simple compassion for another’s suffering.