Hoy sufra suceda lo que suceda. Hoy sufro solamente.It has been months, has it been a year? There has been so much to write, but life has been coming at me like a speeding train, hiding another train, as the Kenneth Koch poem goes, such that by the time I have a moment to write something down, something bigger, something worse has happened, something that has made anything I was going to write so trite.
- Cesar Vallejo, "Voy a hablar de la esperanza"
What are we even doing?
This week, I came down with an illness, and it knocked me down hard, but I wondered, despite the objective evidence, if it was a real illness. Or if this virus of a society we are living in now had infected me with enough bitterness to just have total body aches, chills, and a barky cough.
I don't have much free time in my life these days, as a general rule. And I surely don't have time for you if you don't believe black lives matter, if you don't believe there's a problem with guns in this country, if you don't believe there's a problem period until police officers are shot. I don't have time for you. But is that because I'm sick right now? Sick with this virus of American living? I don't know. I want to make time to have reasonable discussions with reasonable people. I used to be able to do this, once upon a time.
Why can't it happen anymore? Is it because the disparities have become too much of a chasm? Is it because we have all just gotten tired of our explaining ourselves? I don't know, because I am sick. Really, I should be asleep right now, trying to fight off this fever, but everything about everything is causing my brain to melt.
I am a scientist, I have been one as long as I can remember, in so many ways. And they say, as a general rule, write what you know, and wow, a lot of people need to remember that these days, and don't. It's not my place to do what others have done better, which has to do with current events. But all I can write about is being a physician, and how these problems that everyone else writes about- they are like a poisonous slime that seeps into every nook and cranny of our whole foundation, of every aspect of life in America.
Because I see incontrovertible proof every single day.
For example, in the last year, Phife Dawg (of a Tribe Called Quest) and Prince Be (of PM Dawn) passed away from complications due to diabetes mellitus. This is a disease that impacts African-Americans inordinately moreso than anyone else. Look, I am a big fan of Tribe, and I'm ride-or-die for "I'd die without you" but let's set that aside for a moment. Just name for me one famous white person (musician, actor, celebrity of any kind) who died from diabetes. If you have good access to healthcare, if you have a good relationship with your physician, if you are compliant (which has a lot to do with whether you have a good relationship with and good access to healthcare), you simply should not die so young from complications from diabetes.
For example, why did the surgeon deny my patient an upfront mastectomy? She is an African-American woman with a decent job. A little rough around the edges, she is someone I immediately liked as she had the most human reactions to news I've broken to her: i.e "F***, I have to do chemotherapy?!?" Her surgeon referred her to me to get neoadjuvant chemotherapy. Patients can have a mastectomy immediately upon the diagnosis of breast cancer, but her surgeon thought it would not successfully rid her of all of her cancer, and thus he referred her to me to get chemotherapy first. The idea was to shrink the tumor down, and then have a mastectomy that was successful at getting everything. The surgeon told me, "I don't know if she's a great candidate for surgery at all... she has kind of a rough family." This patient got through her chemotherapy, the whole time reminding me that she wanted to get surgery as soon as possible. She wanted to have a double mastectomy but the surgeon said no. When she finished her chemotherapy, he dragged his feet on getting her surgery done. I literally had to call the OR to put her on the schedule in order to bully him into operating. And this is just a story, and so it is easy to say, "but this is just a story," #notallsurgeons, etc. Only, there have been a number of studies published in high-impact journals including the Journal of Clinical Oncology that confirm that African-American women are more often recommended to receive neoadjuvant chemotherapy (meaning, they don't get surgery upfront), and also on average, there is at least a week delay in African-American women undergoing surgeries compared to their Caucasian counterparts. This surgeon never said he was making these decisions based on her ethnicity. But it was there, in his behavior. The rough family of which he spoke? Her husband has been in jail for the past year. I do not pretend to know that much about my patient's life. I know she has children who she supports, she works a full-time job, she recently saved enough money to buy a house. Her mother comes with her sometimes to her appointments. Are they loud? A little bit. Does she ask questions in her plain-spoken manner? Sometimes. Would I say, based on this, that she came from a 'rough' family? No, I would not. But I was not her surgeon.
For example, why did one of my colleague's African-American patients wind up on hemodialysis? The woman came to us for care after she was already dialysis-dependent. She has multiple myeloma, which obliterated her kidneys, which can happen if multiple myeloma is left untreated. Here's the thing. She had labs that suggested she was developing myeloma and it went untreated for over a month. By then, her kidneys had already failed. Her myeloma was treated briefly, but then the physicians suggested she was probably beyond help. She came to us for care because of intractable pain. She had intractable pain because myeloma attacks the bones as well. She was a Zumba instructor six months before this. She now has a caring strong advocate in her current hematologist, but the damage is done-- she has very little trust in the medical field, and myeloma has ravaged her. A patient came in with similar symptoms, and was treated aggressively, and her kidney function completely reversed to normal because it was caught in time and treated in a timely fashion. How is this fair?
These are not isolated stories. These are no stories in a bubble. And these are not stories of physicians who are openly racist or consider themselves racist. They are undoubtedly doing the best they can. They undoubtedly think they are treating everyone equally. They will say it is the insurance company barriers. They will say it is a 'rough family.' They will say 'the patient didn't comply with our advice.' They don't say these things maliciously. They don't say these things thinking it makes any difference in outcomes. But I am a scientist, and there are data-- it does make a difference. Almost entirely across the board, African-American healthcare outcomes are still worse than everyone else's, and this is regardless of insurance status, socioeconomic status, geographic location. And there is only one thing to conclude from this-- there is a very big problem and we have to do better. But to be honest, the medical community has neither acknowledged this sufficiently nor taken great strides to fix any of these problems.
And so it is in so many aspects of the overall infrastructure of the United States of America. It is frustrating. I try to be an ally. Every day, I go to work and ask myself how I can be an ally to every patient of mine, and moreso for my African-American patients because they need it more than my other patients. The data show that to be true. I don't do enough. None of us do. On days like this, I just want to be better, I want us all to be better, and I want to say I am more than ready for change. I am sick, aching in my bones, I have the chills, ailing from the stasis that surrounds me.