Advocacy, Medical Care, Me, and Them

Several of us are involved in a new venture that you'll find over at www.regenerativeoutcomes.com. It appears to be cutting edge and justice-filled.  Some wonder why I am doing it.  Others know once they find out.  No, it is not a job. It is a consulting position that is designed to shape various matters.  For me, in short, those are matters of justice.  For my way of thinking, practices that work should work for all of God's children, not just those who can afford it. More on that later.

My own personal health narrative the last few days connects with a story I heard in 2005, one that plays out in my heart and mind frequently. 

The larger theme is advocacy and who gets to do it.  Story number one happened in 2003.  After a routine colonoscopy, 9 days later, I experienced a near life-threatening bleed out.  My wife advocated for me after my efforts failed.  The MD on call said to me, "Drink lots of fluids, and call your doctor in the morning."  Charla said no, that is not enough, so she called my internal medicine doctor at home.  He said go immediately to ER.  She advocated for me. At ER, the nurse said, "We have been looking for you." Dr. Hubbard advocated because Charla advocated, and I was immediately taken to an exam room.  The nurse then said after a bloody episode, "That is what he meant," as the lights, sounds, and everything else went dark.  Blood pressure was 39/13.  I could have been dead at any number of points and places had all of them not advocated for me.

Two years later, I was in Georgia, in a farmer's single-wide out on his property under an huge oak tree, on a country lane named for his deceased wife.  Against the narrative of his mistreatment at the hands of the USDA, there emerged a powerful subtext in his story, the inadequacy of medical care. All thought she had a problem with asthma.  He thought it was more than that, or not that.  His physician was convinced and treated her accordingly.  She was wrong and her patient, the wife of the man I was interviewing, died of a heart attack. His attempts at advocacy did not work. I am haunted by the why of it all.

Over the last few days, a third story.  As my own personal symptoms intensified, I knew what the problem was.  I had read the literature.  Times of acute stress impact the immune system, opportunistic infections set in, and for me this is allergies which turn to allergic rhinitis and then to bronchitis and at least on one occasion to pneumonia.  Charla remembers that one and she reminded me of it.

In order to stay ahead of the symptoms because I knew where they were leading, I checked in to a walk-in clinic and met with the routine set of folks, front desk person who took my basic information, the nurse who checked my vitals, and then the ER physician who reviewed my chart, hid behind statistics and the general scope of things for people with my symptoms.  "You have a cold, and it will follow it's course over the next seven to ten days.  If it does not, come back."  And, no prophelactic medications.  "This is not a cold.  This is how it rolls out for me." Nothing.  No voice. No listening. His mind was made up. He turned and walked out. I quipped to the staff as I left, "Well if I get well, I won't see you, but if I get worse, I'll see you then." We chuckled. I was mad.

Then I took my health into my own hands and made an appointment with my previous family practice physician the next day in another city and another state.  When he and I sat in the same consultation room after a lengthy wait and vitals and all, he asked, "So what are we in for?" I rattled off signs and symptoms and history and all since this was not my first rodeo of health with him.  He listened, read through his electronic chart, and said something like, "Well, I think you are correct."  He then wrote the script, brought it back, and told me that a nurse would be in shortly with the injection.

Why am I boring you, my readers with these stories?  Simply put, this is about justice, advocacy, and privilege.  It is unjust when people have no voice in their own treatment.  Afterall, who knows their bodies better than themselves?  Who knows medical science other than the doctors and nurse?  Whose obligation in the name of patient care and justice is it to weave the two together?  Theirs, the medical providers.  My obligation is to my own health narrative and to speak it in ways that can be understood and respected. Their obligation is to hear that story and out of her or his competencies to engage in a meaningful, though certainly short dialogue with diagnosis, prognosis, intervention, and outcome, real or potential.

Justice demands that people have a voice in concerns that matter to them.  I am a 67 year old white male, who though born very, very poor, who has learned to speak.  As a white male, my voice matters more to some than others and matters more than others to some people and institutions. One person of power and privilege minimized my voice and hid behind his doctor stuff.  I walked out mad and knew he was misguided. This discourse came to a screeching halt. If I followed his decisions, I would soon have pneumonia.  Another voice of power and privilege, another male doctor, listened quickly and respectfully to my story of signs and symptoms, and the story was there in his electronic health record.  Today I am feeling much, much better than I would have if I'd stayed in the voiceless mode with doctor number one.

My story is one of reasonable good health for a person my age.  Charla has a husband who is alive. We speak up and more often than not people listen, and when someone does not listen, we advocate for ourselves and move on to Plan B.

My friend in Georgia and his wife had no voice.  He is a widow.  His wife is dead though living in his memory.  He lives beneath the gigantic oak tree that stretches over the lane named after his wife.

What makes for voices heard and voices unheard?  Is it skin color?  Is it gender? Is it age?  Is it money? What is it, and how does it come to be or not be?

I am realizing that I am, simply put a 67 year old, white male with privilege who is a storyteller at heart. Stories of the gospel, stories of justice and injustice, and all manner of other things are written in my DNA.  I cannot not tell the stories.

Thank you for reading these three stories.  They are all personal in different ways. My prayer for readers is that you will engage your story, the stories of others, and do you best to make the world a better place in your  corner of the world, one story told, one story heard, one story that matters at a time. All stories matter, yours and theirs.