The topic of death and dying rang in person to me as I lost my grandfather from a non-covid related condition this past August. Having experienced him becoming ill briefly before the pandemic and then worsening during, I found myself and my family stuck at a crossroads of making safer choices to potentially lengthen his life and wanted to be with him to provide love and care during this difficult time. The experience we had is not unique as many families and terminal patients found themselves with the same dilemma

This poses a question of when should individual wishes be prioritized over public health measures. With many states recognizing the right to die and refuse care as an individual right, it is not a far stretch to think there should be some room to accept risk of exposure during a pandemic. While I cannot entirely speak from the patient perspective I imagine if I were myself in that position I’d find more value in being surrounded in those I care about in my end time (whether that be years, months, or days) than I would in extending my lowered quality of life.

The policy perspective primarily surrounds those patients receiving longterm care within medical facilities. This differs from my personal experience with my family member who would commute to receive care and reside at home. In cases similar to that of mine it falls on the individual families to make decisions based on recommendations however, I found that these recommendations imposed guilt if not followed even to that of my grandfathers wishes. Having been through this experience I find that there is a place for a voice in the public health field that acknowledges that sometimes individual wishes should prevail over the “best” health measures. In times of mass death it is important to not forget that these people are not just statistics but independent people with unique experiences.

The film authentically portrayed how the stigma of a disease can so quickly isolate the affected. It wasn’t just the concern of contagiousness – it was that “I don’t even want to look at you” sort of hostility. Specifically showing this stigma was the scene of them in the pool, where the lady came and asked them to put on a shirt so others do not see their back. While the lady had the kindness to share the presumably private pool with them, she still had to enforce this constricting ‘bubble’ onto them due to the pressure of societal judgements. Even if the disease had not yet reached the point of declining Mark’s physical health, it seemed that the immediate isolation by societal judgements would have already made the reality of death seemingly hovering over his shoulders.

It reminded me of my dad refusing to get a medical check-up, despite being in his early 60s. He’d rather die from a disease with a possible treatment and suffer only when his physical health truly begins to deteriorate, rather than ‘prematurely’ suffering mentally at the moment of diagnosis. At the time, I didn’t get his reason – after all, why not try to identify the illness and have higher chance of treating it? This film documentary, however, truly puts into perspective the degree to which societal judgement has an effect on healthcare.

This parallel is seen during the COVID19 pandemic too – how certain stigmas caused this rift regarding vaccination: Vaccinate, or not vaccinate? Vaccinate Moderna, or Pfizer? Booster, or no booster? Those were the ‘hot topics’ blazing on all media platforms. Healthcare was no longer simply ‘to create a vaccine and provide access’ but rather became an endless wrestling with miscommunication, societal judgements, public opinions, and so forth. From this perspective, society seems to be working against the momentum of healthcare. For example, stigmas in society causes divisions regarding masking, school policies, quarantine policies, social distancing guidance, etc. I wonder what it would take for society to intertwine itself with healthcare, and vice versa, and for both to summate constructively towards battling diseases.

The lecture of Death and Dying in the context of pandemics has had me reflecting on what death has looked like in various public health crises. The scene of Mark’s death in “The View From Here” was one of the first times I have seen a death from AIDS. I grew up after the worst of the HIV/AIDS crisis and often feel removed from that disease in many ways. Thinking about how at one point death from AIDS was inevitable, and something that could be planned to an extent, is so different from other infectious disease epidemics.

The first time I became aware of pandemic death was really during the Ebola outbreak between 2014-2016 in West Africa. I had been studying the psychology of death through courses and even research, but was so struck by how scary death looked in this setting. News reports showed images of individuals in full PPE carting away body bags, with weary onlookers keeping a distance. The last days were often painful for patients, likely dying of profuse hemorrhage, encephalopathy, or sudden death. If medical care wasn’t available early, death was likely and would often occur quickly.

Of course, our most familiar experiences with ID death now come from the ongoing COVID-19 pandemic. Similar to death from both HIV/AIDS and Ebola, there is an element of fear. But unlike HIV/AIDS, Ebola and COVID deaths often times couldn’t be planned (speaking to HIV after the virus was identified and could be tested). There is a sudden finality to it, with people succumbing very quickly after exhibiting symptoms. There is little time to make arrangements, and no time to alert all loved ones. At points, there were no physical goodbyes, no after-death rituals, and very little closure. If you had not lived through the HIV/AIDS crisis, these events were so new and jarring. Regardless, with each disease, it never gets easier. While noncommunicable diseases are the most often causes of death, I’m afraid the future will hold more infectious disease outbreaks. This means thinking about how to handle death with both old and new challenges.

Last class, we had the honor of hearing from Dr. Colleen Kraft and Dr. Clifford Gunthel. Rather than delivering a typical presentation with PowerPoint slides, the speakers chose to run an interactive session featuring a film documenting the story of a couple suffering from AIDS. The film was compelling, especially since several friends shared that they were fighting back tears while engaging with the video. For me, one theme stood out: how Mark deals with the loss of Tom.

One scene that caused me to cry (which only worsened my sickness-induced symptom of watery eyes) was seeing Tom’s body shortly after he passed away. The gravity of AIDS became even more abundantly clear as I could not imagine how one would feel to view their loved one in such a final state. However, I vividly recall hearing Mark sing “You Are My Sunshine” by Jasmine Thompson; the voice breaks in Mark’s singing as he was weeping were immensely painful, and there were numerous times that I wanted to cover my ears as the scene made my heart break. However, I was immediately reminded of my time shadowing a physician at a neuro-ICU. At the neuro-ICU, I saw countless families lose loved ones and cope in numerous ways, ranging from singing to performing religious rituals to screaming. Especially when a patient is at the neuro-ICU for a critical condition, family members are aware of the possibility that their loved one may not make it. However, knowing that information already did not make the neuro-ICU losses any easier, similar to Mark’s loss of Tom.

Another impactful scene in the film involved Mark sharing how silly it felt to read a book on the several stages of grief. I recall him explaining that reading the text seemed trivial, considering he knows how he feels and does not need to be explained that he may be undergoing the stage of denial or acceptance. Hearing the aforementioned dialogue made me ponder how it must feel to read books about other conditions while having first-hand experiences with the condition. For example, when one is anxious and quite overwhelmed, I imagine it would not be beneficial to read descriptions of how one could be stressed. Therefore, I believe that texts such as those about grief for one who lost a loved one should be carefully written with advice to manage pain rather than descriptions that people could describe as ‘mansplaining.’ This scene also reminded me of my time shadowing a physician at a neuro-ICU. When prepping for a meeting with a family that lost a family member, I was told by the physician to avoid explaining their pain as such a conversation can appear insensitive and condescending by unintentionally minimizing the grief of the family.

This isn’t the typical interpretation of stigma in this era. But there is a subtle and unspoken stigma people feel against becoming infected with Covid. The result is that people walk around sick and in denial until it is undeniable. It’s a reoccurring trope in comedies, and we laugh it off—”sure, maybe them, but I’d never”—yet it’s very real.

The people I’ve seen coughing or sneezing since 2020 have nearly all been convinced, for various reason, that it was certainly not Covid. Have you seen the same? I’ve had a good friend admit he lost his taste but still declare he knew, without testing, it wasn’t Covid. I’ve seen the single fiercest of Covid safety advocate I know stroll into class, sneezing, snuffling, and hacking coughs until the whole of the rest of the students had packed up, mid-class, and moved to the other side. She very genuinely refused to consider that she had Covid.

Everyone does it, maybe not to this degree. But symptoms develop slowly, and we have to make a proactive decision at some point to make our day and our week a whole lot worse. The best (and only subconsciously selfish) strategy is to remain confident it’s nothing and that it will subside. In many mild cases, that’s exactly what happens.

To counteract this, we need to build a culture of calm around Covid. We need to destigmatize it and gently encourage people to be honest. The only social pressure we should foster should be ‘Do not walk around sick.’ We have not placed much of our limited social capital to realizing this, so for the time being the beast still walks among us.

In the spring of my first year in my master’s program, I interned at the DeKalb County Medical Examiner’s Office. This opportunity was easily one of the most influential experiences I’ve had, and one that has informed who I want to be in the field of public health. I had anticipated just doing data analysis work using their mortality data, but ended up also shadowing and assisting in autopsies, taking photos of scenes for the forensic investigators, and assisting in taking the decedent from the scene to the lab. As heartbreaking as that job often was for me, it fundamentally changed my view on public health. Public health and policy is often taught and talked about in a very high-level, theoretical manner, but talking with families and being witness to the most vulnerable moments of human life, loss, and grief, transformed public health into something deeply personal and connected for me.

I bring this up because of the Silverlake documentary we watched today. The scene of Mark filming Tom right after his passing was so emotional, raw, and heartbreaking. It hit me really hard because I’ve had similar experiences going to scenes while the families were still there. Like Mark talks about in the documentary, even when you know what is coming, the finality of death and loss hits you like a train. That is something that I think notably distinguishes the COVID-19 pandemic from the HIV/AIDS crisis of the 80s. For HIV/AIDS back then, a diagnosis was essentially a death sentence. Mark and Tom spoke about feeling like they were watching themselves die for years before they eventually passed; it was impending, incremental, and anticipated. With COVID-19, many people have dismissed it as being just like the flu, and probably not all that dangerous if you’re young. But I witnessed a lot of COVID-19 deaths; from children and teenagers to parents and grandparents. Death from COVID-19 blindsides people. There are no winners either way; knowing or not knowing death is coming doesn’t make its arrival any less devastating, but I think it tells us a lot about how people understood these two different viruses. We’ve talked about this a lot with health communication and education, but I think this demonstrates the importance of putting people at the front of public health. I think people who may have ostracized those living with AIDS or demonized/moralized the virus could not have watched that documentary without having their entire perception of the virus and people’s experience with it change. Similarly, I think witnessing so much loss and pain that families experienced when a loved one passed from COVID left a lasting impact on me, and gave different weight to the virus.

Typically, we are aware of the magnitude of mortality that diseases such as HIV/AIDS and COVID-19 cause, and at the exact same time, we’re so unaware of the magnitude. I read the preparatory article entitled, “What it’s Like to Die from COVID”, and found it extremely eye opening. I’m well aware that countless have been hospitalized and even succumb to COVID-19, but I didn’t truly know what the experience entails.  To read not only about the isolation and depression but also the delirium that often sets in, the way it actually feels to grasp for air (the breathing through a straw example was particularly astonishing), the invasiveness of life-saving efforts, and how if you don’t have contact with loved ones before they are placed on a ventilator, you may not get another chance to do so. What was equally scary, and heartbreaking was the discussion surrounding death from HIV/AIDS. I appreciate that Dr. Kraft and Dr. Gunthel took us through this grueling process. I found myself feeling a deep sadness even hours after the discussion that centered on the Silverlake Life documentary. Despite the sorrowful and melancholy situation, the two men were supportive of one another and even tried to share humorous moments with one another. Knowing the true experience is a powerful thing and I’m curious to know: if more people were aware of what someone infected with and dying from a disease (such as HIV/AIDS) experiences, would they be more gracious, understanding, and supportive?

While Dr. Raper did not specifically speak on the difference between COVID19 and HIV, he talked in great details about certain approaches employed to help someone. It was refreshing to hear him emphasize the point that the person offering help to someone needs to be aware that they, as the ‘helper,’ cannot simply be dismissive of the person’s choices, even if it at first seems ‘clearly bad.’ The example he elaborated on was helping someone out of an abusive relationship. Most people would be tempted to bombard the person with questions and assumptions such as “Why are you still with them? They are so abusive! You are so stupid for choosing to stay with them.”

Dr. Raper emphasized, however, that perhaps someone who makes that decision does so out of the comfort knowing that they are familiar with that environment, and that breaking free from the relationship might put them in an unknown financial and/or social status. I thought of how this might be applied to talking to someone who identifies as ‘anti-vaxxer.’ While I’m not too sure of what the correct, best way is, I think the definitely wrong way, supported by the ideas brought up by Dr. Raper, is bashing on those people with statements such as “You don’t want to vaccinate? You’re so stupid! It’s literally going to save your life!” While I intuitively knew that this was the wrong approach even prior to the talk, Dr. Raper spoke of this approach in the broader context of psychiatry, which reassured me that it truly is undoubtedly the ‘wrong’ way to communicate with those opposing views of this pandemic.

The conversation that Dr. Raper facilitated last Tuesday was one of the most successful Zoom classes I have ever been a part of. Our conversation tackled topics that I’ve seen many people tip-toe around with grace–suicide, domestic violence, depression, hopelessness, and ways to deal with those things in non-destructive manners.

However, one topic that I feel often gets forgotten in the conversation of Covid-19 and mental health is the way that the pandemic “did away” with the sick day. In fact, as I write this blog post, I am sick (though I’ve tested negative for Covid). My past few days have been filled with sending e-mails to professors all but apologizing for daring to fall ill, and attending Zoom meetings for classes that I would much rather be sleeping through. In fact, to get over whatever bug I’ve caught, I probably should be sleeping through them, but the fear of having my Zoom box called on keeps me awake.

My head is cloudy, it is an immense struggle to conjure up an intelligible sentence, yet I feel guilty for even thinking about the prospect of some extra rest when I could be doing an assignment. The fear of falling behind in my classes is outweighing my body’s call for rest. After all, how can I rest when the pandemic lifted any chance of taking a full sick day? Everything can be done online, so why wouldn’t it be?

Resting while ill is imperative for making a full recovery as quickly and gracefully as possible. Although this is anecdotal, I’ve found that trying to do work while sick makes me feel horrible, mentally. I find it near-impossible to focus, and the difficulty that I have in producing coherent work makes me feel useless. I often find my already sick mind begin to tumble down thought loops of “not being good enough,” when all I need to do is get some rest while I’m fighting off whatever ailment is affecting me.

However, calling for the disbandment of Zoom classes while things “return to normal” is an ableist thing to do. For many students who are dealing with chronic illness, Zoom sessions are their chance to not be forced to take time off from school. I certainly understand the benefit of having a Zoom option; nevertheless, I wish that sick days would be re-normalized.

Last week, a topic that Dr. Raper discussed was helplessness and control. A particular conversation that moved me involved culture’s role in shaping one’s feelings of helplessness or control. For example, cultures that emphasize the importance of a man working and being the breadwinner while the woman takes care of the house and raises the children may make a husband who stays at home (due to various reasons, like physical health) feel quite insecure and helpless. Additionally, cultures that stigmatize divorce can make it incredibly difficult to leave an abusive relationship, even if separating from a toxic partner is the best decision an individual can make—the fear of being ostracized by your community can be significant. 

After class, I kept thinking about helplessness during COVID-19, particularly brought on by the Indian culture. I was painfully reminded of how my family and many other Indians living abroad (ex: Indian Americans) lived in a state of fear of losing their loved ones overseas. Such a fear was tightly associated with helplessness due to the travel restrictions imposed by various governments that made travel to and out of India nearly impossible. I heard countless stories of individuals needing to attend the funerals of their loved ones virtually via Zoom. Hindus, who make up the vast majority of India, believe that proper funeral processions must occur; otherwise, it can be challenging for one’s soul to leave a body and continue with its journey (Callaghan Mortuary, n.d.; Kramer, 2021). Not being able to witness the funeral of your loved one in person (if at all due to mass cremation sites becoming the norm to avoid the spread of the contagion) caused immense pain (Singh, 2021). Far too many asked themselves the following: ‘Is living abroad worth it if I cannot even see my family members, who dedicated their lives to doing all they can to see me lead a better life in another country, in their final moments, or at their funeral? Should I have stayed in India?‘ My family, much like many others of the Indian diaspora, constantly called relatives in India and asked if they were doing well, hoping and praying for an affirmative response (Singh, 2021). Do you all relate to this feeling of helplessness over the last couple of years?