7/31 – What Lyme Disease Patients Teach Us About Living in a COVID-19 World

Feature Articles / July 2020

Anna Frost

Anna Frost

When COVID-19 and the subsequent quarantines broke out in the United States beginning in March 2020, the news was unsettling but not incredible. Being that I have completed years of advocacy and research for another zoonotic disease—lyme disease—it was clear to me that lyme patients have insight and tools that may inform people adjusting to this “new normal” of living in isolation and contending with a disease that may affect them, loved ones, or people in their communities. In this paper, I draw on the three major themes that emerged from a six-month grounded theory, ethnographic study I conducted of five lyme patients in 2015. Additionally, I am a lyme patient in remission with three unique—but not uncommon—experiences of isolation in my life, so I begin the paper with these experiences to help us get into the experience of lyme disease and isolation. 

Three Isolating Experiences

Breastfeeding a child is so much more than transmission of breast milk. In addition to the physical and emotional bonds I created with my son, the most prominent experience of breastfeeding was the time spent largely in isolation, usually in a bed or a recliner, and usually with my phone in hand trying to connect with the outside world. Even now, well into his third year, I continue to co-sleep with my son because he truly cannot continue sleeping without my presence much of the time. He’s always been very attached to me and has never slept on his own except for one fluke of a night in a crib. As a result, I am the only person who has put him to bed, and I am even work in or near his room as he sleeps. The one and only time I got away from him at night was for a couple hours when we stayed at a hotel one week before quarantine began, my niece watched him, and I listened to live music a few hundred feet away. As much as I love being home with my son, I have lamented many times about life getting away from me. I often feel like the Ph.D. I received was for nothing.

Isolation is also normal to me in another way. In the past year we purchased a cabin in the mountains 66 miles from the city. We live here full-time in a secluded neighborhood of vacation homes; just two other homes on our block are occupied full-time. We also live at the bottom of an unplowed hill, which means during the snowy months we snowmobile or walk to our cars at the top (just shy of a quarter-mile away). Consequently, contact with others is few and far between compared to those who live in city centers.

Having lyme disease, however, is no doubt the pièce de résistance of isolation. When I got sick with lyme, in a few short days I went from a fit, active 24-year-old to being unable to walk well and move my body, feeling extremely fatigued (which was much worse than my 2.5 years of sleep deprivation since becoming a mother), and lying in bed a lot. By a lot, I mean, some days I would wake up, make breakfast, and go back to bed. Some days I made it to the shower and then go back to bed. Some days I had enough energy to explore the city by foot, but I always needed to recover for a few days after.

While in bed, I slept, watched Netflix (or Blockbuster!), read, wrote, learned how to solve crosswords, and looked out the window. Every day was the same, yet every day was different, too. Each morning I would wake up and ask myself, “Where will I go today?” The fact that I had few responsibilities and nowhere to be meant I could do anything and nothing. It was all up to me. After a childhood of trauma and subsequent PTSD and depression, for the first time in my life I got to focus on myself. I walked as slow as I wanted, literally stopped to smell the flowers, eavesdropped on strangers’ conversations, sat for hours at coffee shops drinking lots of coffee, observed car accidents and house fires, and watched the birds soar against the clouds. Through movement, I healed both physically and emotionally; and because time stopped, I could finally take a breath and gain control over my life’s trajectory.

Nevertheless, for much of the four years I was sick, I had no idea when I would be ‘not sick.’ For a long while, there was no end to my body pain and fatigue. I thought I would never be in a relationship and had therefore written off having a child entirely. The idea of going to work every day appeared to be only a dream. I thought my life was over forever and ever.

My fears went largely unmet, however. I earned my doctorate while working part-time and battling various stress-induced/lyme-related illnesses. At one point, I wrote three months straight 6-10 hours a day, with one day off every eighth day. Then I met my current partner, we had a child, and I have worked full-time. Though I do not currently work except for some part-time freelancing, somehow I have the energy to care for my child nearly 24/7 (he still wakes up at night). I have read being a stay-at-home mom is equal to 2.5 jobs, so I suppose I work more than ever now.

Lyme Disease Grounded Theory, Ethnographic Study

A few years ago, I conducted a grounded theory, ethnographic study of five lyme patients in the Pacific Northwest (Frost). I argued that the lyme body is the crux of the reality of lyme disease; as such, the embodiment of lyme shapes knowing the disease. The lyme body is a weird body borne of chaos that redistributes and regenerates power. Modeling a “movement of thinking,” the lyme body informs, influences, and transforms the possibilities of all that could be known about the disease. In that light, the experiences of lyme disease can be informative and relevant for times like the one we are living in —where patients experience wide-ranging symptoms; scarce testing; an elusive vaccine; ineffective, individualized, and/or complex treatment; lifestyle restriction; and ever-evolving, but sometimes conflicting research, knowledge, and policy.

My study resulted in three dominant themes about the lyme body. These themes—time, sacrificial bonds, and what I call the “philosophy of the weird”—demonstrate the queerest qualities of the lyme body. By naming these “queer,” I do not intend to exclude other illnesses or phenomena; it means that these three themes have a differential quality that clearly emerged in my research, making them worth discussing. Additionally, the themes here might be constructive to other equally queer phenomena, such as COVID-19.

Time

The forever nature of the lyme body is a casualty of “slow violence.” According to Nixon, “[Slow violence] occurs gradually and out of sight, a violence of delayed destruction that is dispersed across time and space, an attritional violence that is typically not viewed as violence at all” (2). Nixon pointed out that normative violence is typically considered to occur in a fixed place in a very quick amount of time and typically in a spectacular fashion. Indeed, the “rhetoric of precision” (201) suggests violence, and especially war, to be quick and immediate. It is easy, therefore, to call the 1991 Gulf War a precise four-day war until one considers that it was the first depleted-uranium conflict in history. As a result, the consequences of this radioactive material have been indiscriminate and incapable of being judged. According to Nixon, slow violence is “incremental and accretive” (2) because its consequences wreak havoc across exponential spheres of influence so that the conditions which sustain life gradually degrade.

In that light, spacematter must be factored into what is considered to constitute time. For instance, upon exploring the impacts of contaminated ecological zones, Nixon noticed that the size of these zones depended on who has the power to make those decisions. Accordingly, the dimensions of these zones tend to become a “contest” (47) between those who gain official recognition as sufferers and those who fail to be recognized either “because their narratives of injury are deemed to fail the prevailing politico-scientific logic of causation” (47) or because they quite simply lack the political connections.

Therefore, time is not about merely watching the minutes and days tick by, but about the way it shapes and is shaped by space and matter. If the rhetoric of precision decides that violence occurs in one specific time in one exact place in one unambiguous, observable physical manifestation of the body, bodies that experience slow violence will surely fail to be recognized as “official sufferers.” As such, the lyme body could be considered to be an archetype of slow violence, as evidenced in the numerous and nebulous facts and qualities of the disease, including but not limited to:

  • The time, location, and class of disease transmission;
  • The time, ability, and place of access to health care;
  • The time, location, and type of testing;
  • The time, location, and delineation of diagnosis;
  • The manifestations of symptoms in the body across time and space;
  • The length and kind of treatments, and the manifestations of the treatments in the body across time and space;
  • The presence of other diseases and syndromes, which are either the cause of lyme or caused by lyme;
  • The type of resources and the time in which patients have them; and 
  • The narratives embodied within patient and doctors about the disease trajectory across time and space.

As an “incremental and accretive” (Nixon 2) illness, lyme disease seems to be experienced like a slow-moving landslide across spacetimematter. Emotions, conversations, lab tests, relationships, doctors’ medical training, financial resources, symptoms, work, desires, policies, geographic regions, and research all intersect and diffract, eventually becoming so entangled with one another that it is impossible to separate them anymore. Time, therefore, appears to be the one constant variable that constitutes the lyme body.

Still, even the measurement of time will always be different. How does one measure time? In med passes? In days recovering from a seemingly innocuous activity? In days not working? In periods of pre-lyme? pre-diagnosis? during treatment? post-treatment? How one comes to define time in lyme disease will be different for each person.

Indeed, for someone born with the disease, a “pre-lyme” phase of life will never exist. Additionally, all that constitutes the lyme body is no doubt the opposite of precision (Nixon). When it comes to understanding and knowing the lyme body, there are only “possiblys” and “ohhhh, yeahhhhs” when recounting the disease. In this way, the lyme body is almost all correlation and little causation.

Likewise, there are no true zones; travel and climate change demonstrate that if lyme disease is an epidemic in the Northeastern U.S., then it must be assumed to be everywhere. Furthermore, since few assertions can be made about lyme disease (due to little research and knowledge), we must err on the side of larger zones than smaller ones. In this manner, then, the lyme body is more likely to be constituted by “how the fucks?” and “I don’t knows.”

The lyme body is almost all clarification and little conviction, as well; it is moving through spacetimematter in ways yet seen or understood right now. Therefore, the more we lean on correlation and clarification, rather than on causation and conviction, the greater chance we will create room for the lyme body to shape knowing the disease.

Sacrificial Bonds

To endure for as long as it does under the less-than-optimal conditions it does, there is little doubt that the lyme body is a “tough” being. In fact, all the sufferers in my study expressed surprise for continuing to remain alive in a world that seems to minimize and deny their disease at every turn. Consequently, I was interested in that which makes the “tough” lyme body. 

For this, I was informed by Thompson et al. who found that sacrificial bonds at the molecular level may be partially responsible for bone’s toughness. To use Graham’s interpretation, “[S]acrificial bonds … can break and reform, which means the collagen keeps extending and absorbing energy without rupturing the backbone of the structure.” In simpler terms, these sacrificial bonds absorb stress. Therefore, the “tough” lyme body is fashioned by others helping to carry their load—emotionally, financially, and physically speaking. Furthermore, each of the lyme sufferers held a sacrificial bond with one other person, except in the case when one of the participants bonded with both of her parents, as she contracted lyme disease when she was a senior in high school.

Of the 19 friends and family interviewed for the study, six emerged to demonstrate sacrificial bonds with their respective lyme sufferers. I chose these six because their 20 most frequent coding stripes indicated two or more relevant topics with 30% or more coverage in their interviews. This contrasts with all of the other friends and family who mainly displayed fewer than 20% coverage for any single coding stripe. 

The data that emerged from this study could not go unnoticed because they indicated that certain friends, family, and even a co-worker were having a relatively intense experience of lyme disease. Make no mistake: this is not empathy or sympathy because that would imply a distance from the actual experience. Rather, these friends, family members, and co-worker indicated they were having an experience to the degree of the impact they felt from their loved one having lyme disease. While they may not necessarily have had the disease themselves, they nonetheless embodied a highly intense experience of the disease—precisely because the disease affected them on a significantly meaningful level. 

Lizzie

The most striking data came from the mom of the participant who had contracted lyme disease at age 17. In that study, I gave the participant the pseudonym ‘Lizzie,’ so I will refer to her this way here. (I use pseudonyms for all participants I name.) Lizzie’s mom’s lowest relevant topic was 47% and her highest was almost 62%. This should come as no surprise since Lizzie was a minor when she fell sick with lyme disease and her dad had already taken a job on the other coast. As a result, her mom was Lizzie’s primary caretaker for the first 20 months until Lizzie went to college. Her mom scheduled doctor appointments, acted as the primary point of communication between themselves and healthcare professionals, conducted her own research during the day, and physically cared for Lizzie while she was home sick in bed. 

What is more, Lizzie’s mom was the only friend or family member I interviewed who narrated their version of their loved one’s “lyme story” as if she could be the sufferer herself. For instance, Lizzie’s mom provided details that Lizzie had glossed over; and when some of their details conflicted, I had to double back to request consensus between them. In any event, I used their narratives in equal amounts to merge them as one story in my study. Likewise, Lizzie’s mom’s tone felt as exasperated as all the sufferers’ were. Where the codes indicated feeling alone, not knowing what to do, and having a sense of fear and uncertainty, little difference existed between Lizzie’s mom and the actual sufferers speaking about their experiences inside the arduous journey of being a lyme body. This makes sense because as both her mom and primary caretaker, what was “being done” to Lizzie was de facto “being done” to her mom. 

Brooke and Jae

Moving on, the partners of Brooke and Jae, two other participants in my study, both demonstrated a sacrificial bond in one similar way: “experience with sufferer,” one of the most frequent topics to emerge in each of their interviews. Having an experience with the sufferer makes sense due to their daily physical, emotional, and financial proximity to the lyme patient. Additionally, Brooke and her husband shared parenting responsibilities of three young children. At times, Brooke’s husband felt like he took more responsibility for parenting the children than Brooke did. The sacrificial bond, therefore, comes less from a sense of resentment for the increased responsibility and more from the possibility that Brooke’s health may finally turn from “fragile” to “broken.” If that were to happen, Brooke may be too sick to work even, at which point there could be no turning back and devastating to them financially, emotionally, and relationally. 

Likewise, Jae’s partner was extremely conscious that she was choosing to pick up the slack for Jae. While some of the extra responsibilities were practical, such as doing more chores, much of the sacrificial bond was formed by putting Jae’s needs ahead of her own. For instance, Jae’s partner loved Jae enough that she was willing to forego sex unless and until Jae’s libido returned. 

The sacrificial bond that both Brooke’s and Jae’s partners demonstrated is one in which they are committing to a marriage or partnership “for better, for worse, or for near annihilation,” clearly knowing the risk of annihilation is higher than average. It is one thing to commit to another person when they are relatively healthy, but few might sign up for or stay in a partnership knowing the decision would leave them the primary breadwinner, in debt, in constant sexual frustration, practically raising kids alone, and caretaking for their partner.

Lana

The sacrificial bond between Lana, the fourth participant, and her 24-old-daughter carried a different tone than the ones mentioned thus far. Though Lana was adamant that she passed lyme disease to her daughter in-utero and Lana’s 26-year-old son believing he contracted lyme disease in-utero, her daughter was adamant that she suffered from an autoimmune disease unrelated to lyme. Whatever the case may be, Lana’s daughter shared that she had a tumultuous relationship with her mom. This stemmed from experiencing a single mother who was always sick and fatigued in the midst of working multiple jobs to make ends meet and being dragged to watch her mom’s sporting hobby almost every weekend. Moreover, according to Lana’s daughter, Lana’s memory was “fallible,” which often translated into forgetting her daughter’s important school events. 

Lana’s daughter admitted that her mom’s memory and other symptoms did seem to get better with antibiotics, and that the lyme disease diagnosis explained why her mom’s modus operandi, as well. However, Lana’s daughter believed lyme disease compounded certain issues that preceded the disease. As a result, Lana’s daughter had a very difficult time untangling the effects of lyme disease from the consequences of her mom’s personality. Either way, Lana’s daughter continued to experience many emotional and psychological triggers in relationship to her mother. I personally observed her daughter being triggered on at least two occasions during the study; consequently, I recommended she receive psychotherapy. 

In all, the sacrificial bond between Lana and her daughter is one built on the presence of disease in a mother-child relationship. Illness or not, no doubt Lana’s daughter was in the midst of figuring out how to be a separate person apart from her mother. Yet, the experience of Lana suffering from lyme disease for as long as her daughter has been alive—while her daughter simultaneously experienced her own illness—created a complex set of ties to one another. At the very least, present-day conversations always seemed to originate in the past. According to Lana’s daughter, 

I have a lot of love for my mom. I have a lot of resentment and anger, as well, but luckily I’ve [sighs] – it’s mostly logical now and then every once in a while, especially when I am drinking, it will blow up. And to her it’s out of nowhere, but for me, it’s like, ‘Ehh…’ You know, I got over feeling that way on the surface, you know, like years ago, but it didn’t go away. And then I feel bad for being such a bitch to my mom. Like, she can’t do anything about it now. It’s kind of what she says, but it doesn’t mean that I don’t want some validation. She does give it to me sometimes, which is why, again, it feels pointless.

Lana’s daughter added that she preferred “not to dwell” on the conflict with her mom, instead drowning out her emotions, anxiety, trauma, and body pain with alcohol almost every night of the week. Without further exploration, it would be difficult to identify which stress Lana’s daughter carried for her mom, but the point here is that the sacrificial bond between Lana and her daughter calls attention to the emotional and psychological burdens family and friends may be absorbing as a consequence of their loved one having lyme disease. The sacrificial bond between Lana and her daughter called attention to the emotional and psychological burdens family and friends may be absorbing as a consequence of their loved one having lyme disease. (Note: The question about whether or not lyme disease causes psychological problems was beyond the purview of this study.)

Strider

In the case of the fifth lyme participant, Strider, the sixth and final person to demonstrate a sacrificial bond was his former supervisor. On the surface, this may seem odd since she was neither a family member nor a close friend. However, the bond becomes clearer upon discovering she has known Strider from early in his nursing career, supervised him for about eight years until he lost his job due to chronic illness, has been in social settings with him, and observed Strider’s health slowly decline. She was also influential in helping him land two job interviews during the course of the study. If, as they say, people spend more time at work than they do at home, then Strider’s former supervisor would know a lot about him. Indeed, some of the topics of highest frequency in her interview were about Strider’s modus operandus, her experience with him having lyme disease, and his change in health over time. In some ways, she had a front-row seat to his lyme disease, without knowing it was lyme disease. Nevertheless, the primary disadvantage of having a work relationship with Strider was that she did not have the language or opportunity to share her observations. Most of that was her decision to maintain some separation between work and personal lives. Also, a supervisor asking direct questions about someone’s health might be considered illegal. 

In any event, the sacrificial bond between Strider and his former supervisor demonstrated that work relationships and performance get very complex when someone is suffering from lyme disease. Although she always wanted Strider to succeed, she said it was difficult to continue to absorb his increasing anger, “odd” behavior, and the final medical event that put him in the hospital and unable to work. Had she known that he was suffering from lyme disease, she admitted she would have responded differently and probably stepped in to make people aware that a genuine medical issue was affecting his performance. For his part, Strider remained angry over his former supervisor’s “repeated betrayal” in the events that led to his separation from his job. To this day, Strider and his former supervisor have a very complicated relationship, so although Strider said he would be glad to work for her again, he would nevertheless use caution. For her part, she considered herself Strider’s ally and was always open to letting him vent to her if he needed.

The sacrificial bonds the five lyme patients held with their friends and family members were created from the absorption of burden and stress that the lyme sufferers would have otherwise carried alone. Whether as a parent, partner, child, or work supervisor, these sacrificial bonds demonstrated that the attachment has less to do with geographic proximity, per se, and more with the degree of the perception of potential loss in their relationship agreements. By absorbing a little more burden, perhaps these friends and family members maintained a level of consistency, stability, and reliability that prevented any party from feeling out of control too much. At minimum, the stronger the sacrificial bonds were, the more they seemed to create a “tough” lyme body that is capable of withstanding a world in which it does not fit.

The Philosophy of the Weird

In my study, all the participants spoke about weirdness in terms of: symptoms, their illness trajectories, and the nature of lyme disease in general. In fact, I counted no less than 20 times in my study in which I quoted a participant referring to a ‘weird’ aspect of their illness experience. What is more, most likely there were several points throughout this study where readers were genuinely baffled. For instance, why do lyme-literate doctors face sanctions and risk their careers and reputations if they are legally allowed to treat the disease so long as they support their clinical decisions? 

On the outset, questions like these have no good answers because they point out the obvious contradictions that exist. However, the problem is not in the contradictions themselves, but rather in our material and discursive positions to them. In other words, we cannot resolve these contradictions until we first presume the contradictions exist and then understand the way these contradictions manifest through perspectives.

In relation to the disease, I got the sense that the study’s participants initially positioned themselves as ‘normal’ or rational (logos), while the nature of disease is ‘weird’ or irrational (legein) (Corradi Fiumara 1-17). As the result of its paradoxical nature, this ‘weird’ relationship can often be anxiety-provoking, as in the case when the mind says “go,” but the body says “no” (Maté 3). Yet, there comes a point when the lyme body no longer seems to consider itself ‘normal’ anymore and, likewise, lyme disease no longer seems ‘weird.’

It is this movement from ‘normal’ to ‘weird’ and vice versa that I wish to explore here. I suspect that lessons can be learned about the process of knowing lyme disease in the way the lyme body distances itself from binarisms. By exploring these lessons, the lyme body further demonstrates its ability to shape knowing the disease. 

Using Chris Mowles’ work on paradox, I explore how the ‘weirdness’ of lyme can provoke the “movement of thinking” (49) about the disease. As a scholar of complexity and management, Mowles seemed most interested in how managers and leaders dynamically act in a constrained world. The assumption here is that despite all the structure and constraints placed on them, humans do gain agency over their lives. Consciousness of the world helps them gain knowledge of the world.

How humans increase their consciousness and knowledge, however, is one of the fundamental questions philosophers have been asking for a long time. Descartes solved the problem by splitting mind from body to the point he did not believe individuals had a body. In contrast, Hegel believed that humans were capable of thinking, as well as thinking about thinking. Consequently, the subject and the object were no longer separate: The thinking self and the object being thought about were once again related to one another. In so doing, Hegel returned the thinking self back to the movement of thinking.

Mead expounded on Hegel by arguing that humans were capable of taking the attitudes of others. The ability to perceive how others view us allows humans to take themselves as objects to themselves. As a result, the subject and object carry a mutually constitutive relationship. On a similar note, Elias suggested that humans shape the social world and vice versa. Therefore, the peculiar becomes entangled with the ordinary so that it is difficult to differentiate between them. In this way, what is ‘weird’ about lyme disease becomes entangled with the ‘normal’ human body. The more the lyme body adopts a dual approach to its illness, the easier it becomes to integrate the ‘weirdness’ of the disease into their lives.

Furthermore, Mowles argued that contradiction in experience is inescapable: “There is no way to resolve the paradox and nowhere to stand outside of it; it generates itself and is ‘self-grounding’: one concept calls out its opposite which is both defined and negated by it” (33). Mowles went on to further suggest that the person must stay with the mutually negating ideas and thereby notice how it “sends the mind moving” (33) even into uncomfortable spaces. The result of this is “a more intense understanding of the paradox that one is experiencing” (33). Though this “movement of thinking” implies that it would yield some kind of accomplishment, Mowles cautioned that it does not necessarily have to be a positive process, lead toward a higher order, or gain some kind of equilibrium. Since the movement of thinking always lives in a state of becoming, there can never be any fixed or stable synthesis of thought. In this way, Mowles was suggesting that paradox is unresolvable, but does not have to be hopeless, either. Humans have incredible ways of completing tasks with that which constitutes them as human: through thinking, talking, and acting. To this, I add that since humans have a body that works in tandem with the mind, they can engage the complex responsive processes necessary to complete tasks and, therefore, to engage contradiction in experience.

Consequently, there is a difference between thinking and knowing (Bernstein 65). The process of knowing starts with reflexivity, which is a third-order process and different than reflection. “[Reflecting is] thinking and feeling deeply about something, possibly our own experience,” Mowles said, “whilst in becoming reflexive we are bringing that reflection back to ourselves and may be changed by it” (60). Therefore, I am suggesting that before we rush to determine, regulate, and control lyme disease knowledge, we instead enter the movement of thinking to turn it back upon ourselves. In other words, the lyme community must allow “thinking about thinking” to change them before making any assertions about lyme disease.

Finally, I am proposing that the ‘weirdness’ of lyme is an essential place to begin thinking about lyme disease because it is entangled with the lyme body, which is already proving itself to embody and withstand the inherent paradoxes and contradictions in the experience of lyme disease. By applying the “philosophy of the weird” to this dual approach to the mind and the body, the lyme community can learn how to best think about the disease that accounts for plural realities and phenomena. We must think about the disease before we can know the disease.

Conclusion

Unfortunately, COVID-19 is not going away soon. At this writing, COVID-19 has a nearly 4% mortality rate, as more than 3.5 million Americans having contracted the disease (where testing has been conducted) and more than 137,000 having died (The New York Times). Case numbers are surging, and parts of the country are in some form of mandated quarantine and restrictions. At some point, it is likely every American could know at least one person with COVID-19, if it is not themselves. 

How we respond to isolation and a disease with so many unknowns will depend on how we think about disease on the personal/interpersonal, organizational/community, and national/global levels. Lyme disease patients already have a head start wrestling with these issues, which make them excellent authorities on dealing with a zoonotic disease with many unknowns and uncertainties. The three themes in my study of lyme sufferers—time, sacrificial bonds, and the ‘philosophy of the weird’—help get individuals into these issues. The theme of time not only describes different ways people measure their lives right now, but also confronts who suffers from COVID-19—at how; sacrificial bonds probes the quality of one’s relational network; and the ‘philosophy of the weird’ challenges one’s expectations of what constitutes the knowledge of disease, such as COVID-19.

I now end this paper with three reflection questions to help get the “mind moving”:

  • How do you measure time right now?
  • Who are the people with whom you have sacrificial bonds? How would you characterize those bonds?
  • How has your life turned “weird” since COVID-19 broke out? How has it normalized?

References

Bernstein, Richard J. Hannah Arendt and the Jewish Question. Sage, 1996.

Corradi Fiumara, Gemma. The Other Side of Language: A Philosophy of Listening. Translated by Charles Lambert, London, 1990.

Frost, Anna. A Grounded Theory Exploration of Knowing: Beginning With the Reality of the Lyme Body. 2016. Gonzaga U, PhD dissertation.

Graham, Sarah. “‘Sacrificial Bonds’ May Give Bone Its Strength.” Scientific American, 13 Dec. 2001. https://www.scientificamerican.com/article/sacrificial-bonds-may-giv/. Accessed July 15, 2020.

Maté, Gabor. When the Body Says No: Exploring the Stress-Disease Connection. Wiley & Sons, 2003.

Mowles, Chris. Managing Uncertainty: Complexity and the Paradoxes of Everyday Organizational Life. Routledge, 2015.

Nixon, Rob. Slow Violence and the Environmentalism of the Poor. Harvard University Press, 2011.

The New York Times. “Coronavirus in the U.S.: Latest Map and Case Count.” https://www.nytimes.com/interactive/2020/us/coronavirus-us-cases.html. Accessed July 15, 2020.

Thompson, James B., et al. (2001). “Bone Indentation Recovery Time Correlates With Bond Reforming Time.” Nature, vol. 414, no. 6865, 2001, pp. 773-776.


Anna Frost, Ph.D., helps others become better versions of themselves through education, the written word, and the mobilization of resources to meet their needs. She is most interested in how individuals and groups become human while inside different or weird bodies. Her specific research interests include writing pedagogy, dialogue, tick-borne disease, chronic illness, and qualitative methodology. Anna is a writing teacher and works as an advocate for lyme disease patients in Washington State.

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