For friends who follow me on this page and on Facebook as well may read between the lines and know that I have a love/hate relationship with medicine. I learned this irony as a child when my father died of a fast-moving cancer when he was only 46 years of age and I was only 10 years of age, and I was his shadow. My mother had a multiplicty of physical and emotional problems, many surgeries, many hospitalizations, and I swore as a teenager that I would avoid hospitals at all costs.
That was a misguided promise to myself as I soon learned that I have my own DNA structure and with it comes a likewise multiplicity of complaints that cut across my father's and my mother's contributions to my health narrative.
In 1997 I was privileged to make an appearance on behalf of Black farmers to a group of attorneys, mediators, and one attorney for the Department of Justice. I've written about that elsewhere and described the contentious setting and how it all turned out. One of the documents admitted into evidence was a white paper I wrote on the diagnoses of Black farmers I had interviewed in preparation for mediation. It was a long and painful list. I saw how white USDA treats Black farmers and observed how the pain and suffering of Black farmers originates and how the medical system treats or rather mistreats them as Black Americans living under the multiple stressors of trying to farm while Black. Strokes, blindness, kidney failure, diabetes out of control, depression, anxiety, paranoia, cancer, widowhood, and more and more.
I remember one gentleman with his wife in south Georgia, sitting with me and another farmer who had introduced them to me. He taught me the word "worriation" and how it controlled his life. His wife agreed. He was dying of cancer. HE SAT THERE, INTERVIEWED WITH ME AND HE WAS DYING OF CANCER. That was painful to know and see and feel. He explained how he got it and in the days since, I have thought of him many times. He died because he was overly exposed to herbicides that are cancer causing, and he was underprepared to protect himself. And, his land had been taken away. I grieve for them even today.
Later, I heard an amazing podcast on the controversial podcast series, 1619.
You can find that specific story here. America has never been free of racism in medical care. If you don't believe me, listen to that episode. It will stir your system.
I am both a cancer survivor and one with another form of cancer. Back in the day, it was renal cell carcinoma that was found and removed in June 2019. Surgery was actually on June 19 of that year. Yes, Juneteenth. At that same time, I was, uneknownest to me, to be discovered carrying small cell lymphocytic lymphoma, a blood cancer. It has been slowly growing since then, but it has taken off in the last year so, so, my treatment has escalated.
I know the feelings of both surving cancer and then battling it as it rages inside some of my cells.
On one occasion I asked a church member who was a nurse, what happened to people who have cancer and do not have insurance? I could manage treatment thankfully as a result of my wife getting us prepared in retirement. Even cancer meds that cost hundreds of thousands of dollars are zeroed out to me because of insurance and grants the hospital, University of Texas Southwestern, finds.
But, the nurse in response to my question back then, simply said, "They die."
I believed her then and I believe her now. I have collected personal data on a large group of Black farmers since 1994, and I believe they suffer enormously, mistrust the white medical sytem generally, and feel fortunate when they find physicians and hospitals who will see them as people and not based on their skin color. The technical terms are macroaggressions, those systemic factors in place that are seldom removed because they are useful, and microagressions, the daily onslaught of insults made verbally and nonverbally by power people in certain places.
Along the way, my sensitivities have gone up enormously and with much gratitude I have met wonderful people who are phlebotomists, techs, cleaning staff, floor nurses, charge nurses, and physicians at all levels of the hospital system.
Yesterday was one of those marker events. The procedure had to be done, and my medical team felt it needed to be done to rule some things out before beginning "targeted immunotherapy" for my SLL condition.
We arrived early as told at the hospital. I was checked in on the first floor, went to the second floor and was checked in again, and then waited for Joe, the first nurse to call me back. From Joe until I was wheeled out at 4:30 in the afternoon, there were at least nine attending staff. Some names I remember and some I don't.
Nissy had been in nursing for 18 years from India to Connecticut to Texas. She was competent, friendly, engaging, and compassionate. The anesthesologist who was in charge of a nurse anesthetist was also extraordinarily engaging. She shared with me her training, locations, and how she fit into the academic/clinical world. She did not, however, tell me that she spoke Arabic. We laughed that given our mutual backgrounds in academics, she could google scholar each other. I really liked her style. The nurse anesthetist was in my room only briefly with another OR nurse and a young nurse who would be shadowing her. The nurse anesthetist made sure I was ready and shot a small amount of Versed into my IV that Nissy had painlessly inserted earlier.
As I was drifting in and out, one nurse recommend a book that fit my read of interest. She knew I would not remember it since I was hazy from Versed, so she called my wife and gave her the name of the book. I've ordered it just a moment ago.
A young urologist who started at UTSW at the same time I entered as a patient came in and took down vital info and told us what they'd be doing. A couple of surprises, from him to us and us to him. No, I did not have a nephrostomy tube coming out my back. Yes, they would shoot dye up in there for a couple of important purposes. He was likewise engaging, our paths had crossed four years ago, and he was our doctor's chief resident. He'll head to NYC shortly to Sloan Kettering.
Then, the main doctor came in. We hadn't seen him in person since 2019, he was older, and we were older. He, likewise was engaging and affable, asked me a couple of challenging questions and finally understood my answer. At one point he signaled for us to be quiet while he read through everything in my chart. He was very thorough. That's a good thing for a patient lying there. He asked for a clarification and gave us some information that staggered us. What the previous doctor had removed was not just tissue, but was cancer. Yes, the C word, CANCER, and he was surprised that we were not yet in treatment. This is the doctor with hundreds of publications that describe what he does and why as a specialist in the robotics of oncology of the kidney area. Afterwards, he gave Charla a thorough run-down of things.
After the procedure, I was hussled to recovery, met with a wonderful nurse, Leela, and she took care of me. When the drain was not draining properly, she called in a fourth year resident who gently and skillfully fixed it and then coached my wife up on how to remove the cather on Friday. Not need to return to Dallas when there are two ways that it could be removed. We get to decide.
Then, Charla goes to get the car, and Leena and I are wrapping up. As we wrapped up, she reached over, wished me well, and gave me a big hug. That stunned me. One nurse one time prayed over me while I was in immense pain, others looked embarrassed because they had unwittingly caused me pain, but I had never been hugged by a nurse. That was deeply moving.
Then, on the drive home in the middle of wall to wall traffic on 121, the phone rang, and my hematologist asked, "Do you know the plan? Do you remember the plan?" To which I replied, "Yes, sir, I remember the plan. Let's move with it."
So, I'll begin targeted immunotherapy a couple of weeks earlier than expected. That's fine by me.
What is the whole point of this? Pain and suffering are universal. Some is a result of our misdoings. Others come naturally as a part of the process of living and dying. Some, however, is a result of malfeasance of powerful people in powerful places who do not give a shit as to what they do and to whom because they can do it with impunity. Mr. and Mrs. Black Farmer who lose their farm and house and livelihood, but Mr. Racist from FSA will retire with full benefits despite his gross, racist mistreatment of these people who simply wanted to farm.
So, as long as my lungs work, and I can breathe this air around me, and as long as I have kidneys that will function, and all of the other body parts that are now 74 years old, I'll continue to write and advocate for Black farmers. Their stories MUST be told.
I will continue to tell stories out of admiration and respect for hospital staff who do their jobs, their callings, well, so as to keep people like me alive and moving.
Their stories are well worth hearing, as time and all allow, because they are good people, decent human beings, many of whom have immigrated to America and to Texas in search of better lives for themselves and their families.
Shame on you if you judge someone by the color of their skin or their accent. Shame on you.
And, may God bless you if you are one of His children who seeks to honor and respect all of God's children, every color, dark or light, because they are precious in His sight, and they may just wind up being your doctors or your nurses or the staff that serve other vital tasks in that hospital that is not quite in your windshield at the moment. Wasn't in mine either back in 2019, but it was then and it is now. I'm just very grateful for the way people care about the sick and wounded in those hospitals.
