An Amateur Self-Advocate

At some point during those salad days between my college graduation and getting married, I attended a charity auction event for a local school where I won croquet lessons for four. Now these were not just any lessons – they were to be given by the World Croquet Federation Champion at The Chattooga Club in Cashiers, NC. Luckily, ignorance of what the lessons were kept the price down.

I grew up with Dark Corner¹ croquet, a particularly brutal form of the game played by my older brothers and their friends that usually ended in shattered croquet balls, broken mallets, and the occasional dog fight. Dark Corner croquet was closely related to a variant of the game played by my uncles in nearby Little Chicago² during the 1930s. There were two major differences. Rather than grass, Little Chicago croquet was played on a clay court and the games were fueled with alcohol. Which should come as no surprise since Little Chicago was the distribution hub for the Dark Corner’s most profitable export – bootleg whiskey. 

After finding three friends confident enough in their masculinity to come with me, we arrived at The Chattooga Club on a bright Saturday morning for our lessons. The croquet greens, designed by the greenskeeper from Augusta National and built on the side of a granite-faced mountain, were spectacular. We were greeted by the world champion, an Englishman, and another player from South Africa, both around the same age as us.

During our conversation, the champion mentioned that he had just turned professional – as in a professional croquet player. I knew that we had entered the age of specialization and by extension, expertism and professionalism in everything from cradle rocking to grave digging. But to have it spread to croquet? I was surprised.

I asked the champion if there was any money in it. He replied with a laugh and said no and as a matter of fact, he was looking to sell his Omega wristwatch that he had recently won in a tournament because he did not have enough money to fly back to England. The South African said that he was pursuing his accountancy degree and would remain an amateur. I have always thought that their conversation perfectly illustrated the difference between a professional and an amateur – an amateur doesn’t have to pawn his watch to get home.

I was reminded of the spread of professionalism during a recent doctor’s visit. My son and I were in the waiting room at his hematologist’s office when a couple came through the door and immediately demanded to be seen. They loudly announced the time of their appointment and that they had to be at another appointment soon, and so on and so forth. I have spent hours in waiting rooms over the years and have observed closely the habits of the professional patient. I could see by their discourteous attitude toward the healthcare staff that this couple belonged to that group.  

Now, do not confuse the actions of the professional patient with being a self-advocate for one’s health. The difference lies with the expectation and the attitude displayed by the patient.

During my years in the South Carolina House, I proactively advocated for continued state funding to assist those with blood disorders – sickle cell anemia and hemophilia. However, I never advocated for those with Parkinson’s with the same enthusiasm. Maybe I concentrated on bleeding disorders because I lost my first son to hemophilia and wanted to make sure that no other parent would have to endure that level of emotional pain. Or maybe I was in denial about my own health issues. Or maybe, like most politicians, I wanted to keep some aspects of my life private.

In any event, I avoided turning into a professional Parkinson’s patient just as I avoided turning into a professional politician during my years in Columbia – two very different professionals bound together by the same sense of entitlement. Now that I am out of politics, should I channel my amateur political skills into that of being an amateur patient advocate?  Is there an overlap of intent of political purpose? Let’s follow this rabbit trail a bit.

Long before Thomas Jefferson grafted John Locke’s “life, liberty and pursuit of happiness” catchphrase into the Declaration of Independence, Locke defined these civil interests in his A Letter Concerning Toleration³ this way:

“Civil interests I call life, liberty, health and indolency of body; and the possession of outward things, such as money, lands, house, furniture, and the like.”

In Locke’s day, indolency meant lack of bodily pain. Think about his definition especially if you are a Republican searching for lost empathy. Alongside life, liberty and property, Locke said that an individual has a right to pursue health and relief from bodily pain without interference – from the government or otherwise. If only Jefferson had added Health to his Declaration . . .

Since individuals who have a health disorder are the best advocates for themselves in pursuing or defending what Locke called “health and indolency of body” it seems a straightforward answer to me, though I never wanted to make my health issues my life. However, I have been drawn into the role of patient advocate if only out of self-preservation. I have learned that the first step is educating both the public and more pressingly, post-COVID health care workers.

The healthcare system in South Carolina’s Upstate suffers from a shortage of qualified healthcare workers. Medical assistants and nurses are stretched thin with more and more of them forced to cover other types of practices. During a recent neurology visit, the nurse who did my pre-exam interview confessed that she normally was an orthopedic nurse and that she was still trying to get used to the questions asked of neurology patients.

Then a few days ago, I had blood drawn to be tested on a non-Parkinson’s health issue. The first medical assistant who took my blood pressure and reviewed my prescription checklist kept remarking that she had never heard of any of the medications listed. She attempted to eliminate “duplicates” that were actually different strengths of the same drug. I stopped her and very kindly said that they were for Parkinson’s. I did not point out that carbidopa/levodopa in various forms has been around for decades. At least she was more knowledgeable than the lab worker who later jabbed me three times to find a vein while asking me if there were any medications available to help Parkinson’s. Again, I answered her kindly while noting that the patience learned dealing with constituent questions has come into good use already.

A pretty good first step in self-advocacy, and so far, I have not had to pawn my watch.

1.     The Dark Corner is an ill-defined area located in the mountainous northeastern corner of Greenville County, SC noted for the production of illegal whiskey.

2.     Little Chicago is a cross-road located in northern Spartanburg County, SC noted as a meeting place for those who transported illegal whiskey.

3.     A Letter Concerning Toleration was published in 1689. In his letter, John Locke proposed religious toleration to be the answer to the continuing conflict between English Catholics and Protestants. Almost needless to say that Toleration and its first cousin, Compromise are concepts that have almost disappeared from politics today.