I never wake up late.
This wasn’t always the case. All the way through residency, I was completely dependent on alarm clocks to keep from oversleeping. So much so that when my alarm clock broke halfway through my internship, I replaced it the next day. I remember driving in the middle of the night to the only store that was still open to purchase a fancy clock-radio for $49—a fortune at the time. Still, I needed something to roust me from bed the next morning, and the shelves were almost bare. My choices came down to this deluxe model, with a CD player and two alarms featuring your choice of three electronic melodies, or a wind-up alarm clock—the type that mustachioed villains attach to bundles of dynamite before the hero swoops in to save the girl. I just couldn’t chance it.
I still own that alarm clock. It sits near the head of my bed softly blinking 12 p.m. Whenever there is a power outage, my clock resets to noon. For years, I would dutifully correct the time, but at some point, I stopped. It just wasn’t necessary. At some point after my residency training—my sleep deficit almost fully repaid—I just started waking up at 6 a.m., plus or minus a few minutes. Even on my days off, I generally find it difficult to sleep in; after a few tries, my eyes open wide, and I get out of bed to start my day, whether or not I have anywhere to go.
This day was different. When I opened my eyes, I could see the soft glow of daylight coming through the window, and I started to relax, ready for a lazy Sunday. Suddenly, I realized it was not Sunday. It was Tuesday, and my first patient’s appointment started in 10 minutes.
I blame the pandemic. Like most of you, I have been working from home for most of this year. At some point, I realized an odd side effect of this new routine was that my workdays stretched into the night. Last year, the drive home served to separate work life from home life. When your office is your living room, the delineation is less clear. Progressively, my workdays became longer, and I started to go to bed later, until it finally had an impact on the homeostasis of my morning routine.
I flew out of bed and into the shower, rinsing off the previous day with cold water that was taking too long to turn warm. After a quick look in the mirror, I decided that fortuitous genetics and bad lighting would allow me to get away without a shave, and I ran downstairs, grabbing yesterday’s shirt along the way.
I like coffee. I don’t drink as much as I used to, but I’m still particular about how my beans are roasted and brewed. I’ve recently taken to using a Hario V60, which is used in barista competitions. Thirty grams of coffee, freshly ground to the size of beach sand, combined with water from a gooseneck kettle, fresh off the boil. After the initial bloom, water is gradually added in lazy circles to a total of 500 g. I’ve taken to experimenting with the grind and the coffee to water ratio, to try to bring out the berry notes that characterize the best African beans.
On this particular morning, adrenaline coursing through my body, I finally saw this technique for what it truly was: a ridiculously antiquated ritual that was keeping me from getting my fix. What I really wanted was a Mr. Coffee machine and a blue can of Maxwell House.
To be frank, this has been a dumpster fire of a year. I’m sure I could have found a more elegant turn of phrase to express this thought, but why bother? You were there. You know.
Instead, in a feat of multitasking, I held my toothbrush in my right hand and a kettle in my left, trying not to give myself a third-degree burn while I ran between the kitchen and the bathroom, simultaneously taming my cowlicks. Coffee in hand, I started to button yesterday’s shirt while I was connecting to our patient portal. I then grabbed a pillow from the couch to use as a lap desk, put my Dell on top, looked directly into the camera, smiled, and gave a hearty “Good morning!” to my first patient.
Tragedy, Writ Small
This has been a year of adjustments for all of us. I’ve taken to keeping an extra shaving kit in my desk at work, because I no longer reliably remember to shave before I leave the house, and the scruffy look isn’t always endearing on Zoom calls. I’ve also stopped whistling. Ever since I was a college student, I’ve whistled while I walk, partly to keep awake, partly to lift my spirits. No longer. I’ve decided that even my most blasé colleagues likely wouldn’t appreciate having a high-velocity stream of air coming at them from my mouth.
I know these are small inconveniences compared to what many of you have endured. As an introvert, I have been preparing for a pandemic for my entire life. I actually don’t mind going several days without seeing someone. A video chat, a few emails, and I’m good. Many of you have endured large financial and social changes that are orders of magnitude more disruptive. I am particularly awed by my colleagues with school-aged children, who are working from home with toddlers in tow.
To be frank, this has been a dumpster fire of a year. I’m sure I could have found a more elegant turn of phrase to express this thought, but why bother? You were there. You know.
It started with the fires that have engulfed the Western U.S. with such ferocity that their smoke has been seen as far east as Upstate New York and Washington, D.C.1 An entire generation of children in California is growing up thinking of smoky as a weather condition, like cloudy or sunny. Then came the protests against racial injustice, which have engulfed the nation in a different kind of flame. Of course, any accounting of this miserable year would be incomplete without an enumeration of the giants we have lost: John Lewis. Ruth Bader Ginsburg. Eddie Van Halen. All vanguards in their respective fields, all gone forever. I used to joke that the only thing missing from this year was locusts, until I read that plagues of locusts had invaded the Middle East and Africa earlier this year, leaving somewhere between 5 million and 25 million people at risk of starvation.2
And now we come to SARS-CoV-2. I am not a conspiracist, but it’s hard to look at the virus and not think it was almost perfectly engineered to wreak the maximum amount of havoc. The disease is most contagious when patients are asymptomatic. Once infected, the virus induces endothelial dysfunction that leads to microthrombi that can appear in almost any organ.3 Brain, kidney, heart—nothing is spared. Once over, the infection leaves behind a lingering misery. These patients, described as long haulers in the press, seem reminiscent of patients with chronic Lyme disease and will likely be just as challenging to treat.
By the time you read these words, my best guess is that we will be in the throes of a third wave of COVID-19, complete with lockdowns and overflowing hospitals. I certainly hope I’m wrong; this pandemic has already taken enough from all of us. By April 2020, more American lives had been lost to COVID-19 than to the Vietnam War.4 By September 2020, COVID-19 had taken more than a million lives worldwide.5
When numbers climb to these heights, I think they start to lose their meaning. The Black Lives Matter protests taught us the importance of saying the victims’ names: Rayshard Brooks. Daniel Prude. George Floyd. Breonna Taylor. Eric Garner. Tamir Rice. Philando Castile.6 Even if you don’t support the movement, writ large, it is impossible to hear the stories of these individual lives and not feel compassion for dreams cut short.
With this in mind, I want to tell you the story of Hannah Kim, a 22-year-old college student in Los Angeles.7 In April 2020, her parents decided to move her 85-year-old grandmother, who had dementia, from her nursing home, because of the increasing prevalence of SARS-CoV-2. They quickly realized they were too late; her grandmother was already infected, and after more agonized discussion, they decided to admit her to a local hospital. Again, they were too late. Soon after her grandmother was admitted to the hospital, Hannah found her father slumped over his desk. Just as the ambulance came to collect him, her mother started to have difficulty breathing. Grandmother, father and mother died of COVID-19, one right after the other, leaving Hannah to care for her 17-year-old brother, Joseph.
I can’t remember how I stumbled across her story. I do remember the most heartbreaking part was not reading Hannah’s announcement of her mother’s death. Rather, it was her penultimate announcement, in which she described her excitement over her mother’s improving prognosis, and how she and her brother were keeping each other in line, to smooth their mother’s transition home.
Honesty & Trust
For me, this story highlights how our public health leadership has failed us. It is easy to ignore something when we discuss it in concepts too large to grasp. Then, the conversation devolves into assertions over individual rights, attributable mortality and backyard re-analysis of studies presented on CNN. But who among us would not have done everything in our power to keep Hannah and Joe with their parents for another year?
I’ve spent a lot of time thinking about what we could have done better with regard to communicating with the public at the start of the pandemic. I think it comes down to two simple concepts: honesty and trust.
I think about the initial message promulgated by Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and hero to many, who initially told us we didn’t need to wear masks. He had a reason; he was concerned the public might snap up all of the medical masks, leaving physicians in the lurch. But that’s not what he said.
In a March 2020 interview with 60 Minutes, Dr. Fauci said, “Right now, in the United States, people should not be walking around with masks. … There’s no reason to be walking around with a mask … . When you’re in the middle of an outbreak, wearing a mask might make people feel a little bit better, and it might even block a droplet, but it’s not providing the perfect protection that people think it is.”8
At some point, the guidance changed. Availability of masks was no longer an issue, and we realized that masks may not protect you, but they may prevent you from transmitting SARS-CoV-2 to others. Now, everyone was supposed to wear a mask. The problem was, because we never clearly explained why we were telling everyone not to wear masks, we struggled to explain, clearly and compellingly, why we had changed our minds.
I take this as a sign that messaging is dead. In politics, messaging refers to the development of a cohesive campaign strategy and core message to try to influence behavior. I think this might have worked in the days when the only sources of information were network news and the local paper. Now that people can choose from almost unlimited news sources (of varying quality), messaging is becoming impossible. Instead, public health experts should just commit to telling people the truth, warts and all. That way, when more data emerge and our interpretation evolves, it doesn’t sound like we have arbitrarily changed our minds, as it did with the messaging about masks. Medicine is hard. Science is hard. All opinions are not equally valid. Perhaps we should be less shy about admitting those truths.
Even more important, we have to rebuild public trust in our public health institutions. When I consent a patient for a clinical trial, I take great efforts to ensure that I have obtained informed consent. That said, I know for most of my patients, the ritual is almost meaningless. They are participating in the consent process, but the real reason they are signing the form is because they trust my judgment, and they trust me.
Our public health institutions have to have the same relationship with the public. The public has to be able to trust what public health institutions tell us and not be worried that their words may be hiding some deeper agenda or policy goal. Only by establishing this level of trust will we be ready for the next pandemic.
Philip Seo, MD, MHS, is an associate professor of medicine at the Johns Hopkins University School of Medicine, Baltimore. He is director of both the Johns Hopkins Vasculitis Center and the Johns Hopkins Rheumatology Fellowship Program.
Notes
Some of you may have noticed that in March 2020, The Rheumatologist took a hard turn. That’s when I realized SARS-CoV-2 wasn’t going to quietly disappear, as had MERS and SARS-CoV-1, and I decided that our coverage should reflect this new, unwelcome visitor to our lives. We decided early on that we could best serve our readership by becoming a place where you could tell your stories. By my count, we have published more than 130 stories related to COVID-19, and we will continue to tell your stories about how COVID-19 has affected your lives until it is no longer necessary, inshallah.
This rapid change of direction was ably assisted by my associate editors, Vicky Ruffing, RN-BC, and Ethan Craig, MD, MHS, who helped create a vision for the type of coverage of the pandemic we wanted to provide. For those of you who miss some of our regular features, be assured that we plan to weave them more expertly with our COVID-19 coverage in the next calendar year, so there will be something for everyone.
Also, I would be remiss if I did not thank Keri Losavio, who is the actual editor of The Rheumatologist, and is responsible for making the trains run on time. I am particularly pleased to note that Wiley, the publisher of The Rheumatologist, has rewarded her hard work with a well-deserved promotion to Custom Content Editor II. In announcing her promotion, the publisher noted, “[d]uring the past six years at Wiley, Keri has been instrumental in expanding The Rheumatologist’s editorial footprint … to help grow the brand.” Truer words never spoken.
One final anecdote: A colleague recently reminded me of the words of Jonathan Mann, who helped mobilize the global response against HIV/AIDS: “Our responsibility is historic, for when the history of … the global response is written, our most precious contribution may well be that at the time of plague, we did not flee; we did not hide; and we did not separate.” Those words now apply to each one of us, in a way that none of us could have possibly imagined at the beginning of this year.
I expect that 2020 will not leave quietly. I predict more than our share of misery lies ahead, but I am hopeful for a brighter future in 2021. Until that time, I place a charge on you: Be kind to one another. Be generous. Be forgiving. This has been a rough year. But, as Thomas Fuller wrote, “It is always darkest just before the day dawneth.”9 And the dawn is in sight.
References
- Andrew S. Smoke from Western wildfires has blown thousands of miles to New York. CNN. 2020 Sep 14.
- Njagi D. The Biblical locust plagues of 2020. Future Planet. BBC. 2020 Aug 6.
- Huertas A, Montani D, Savale L, et al. Endothelial cell dysunfction: A major player in SARS-CoV-2 infection (COVID-19)? Eur Respir J. 2020 Jul 30;56(1):2001634.
- Welna D. Coronavirus has now killed more Americans than Vietnam War. NPR. 2020 Apr 28.
- Aizenman N. COVID-19 deaths top 1 million worldwide. How these 5 nations are driving the pandemic. NPR. 2020 Sep 28.
- Chughtai A. Know their names. Black people killed by the police in the US. Al Jazeera.
- Wong T. Coronavirus devastates Koreatown family, one by one. Los Angeles Times. 2020 Jun 23.
- Impelli M. Fact check: Did Dr. Fauci say no masks like Trump is claiming? Newsweek. 2020 Oct 19.
- Fuller T. (1650) A Pisgah Sight of Palestine and the Confines Thereof: With the History of the Old and New Testament Acted Theron. Lenox, Mass.: HardPress, 2019. p. 206.