Anna Frost, Ph.D.

TBD is complex because it manifests in individuals differently across time and space. Yet, as we have seen in the past 16 months with COVID-19, the ability to understand a complex disease is not impossible. With proper resources, will, and--most essentially--the belief that the disease exists in all its unique manifestations, we can begin to provide timely solutions that allow patients to regain a humane quality of life.

Therefore, I propose three overarching national initiatives to pursue a better understanding of TBD and its solutions:

1. Create a national storytelling project: The way to get into issues is through experience. There is no better way to understand the depth and breadth of the impact of TBD on individuals, families, groups, and communities than gathering stories. Write them down. Audiotape them. Make a video. When we give these stories life, we begin to create authentic movement in the understanding of TBD.

2. Train healthcare practitioners through free/low-cost TBD clinics established across the country: Patients will get the care they need while practitioners receive training from more established practitioners currently practicing. This will have a two-fold effect. First, more practitioners being trained will lessen the burden TBD doctors are currently experiencing. Burnout is real. Second, the increased access to TBD care will allow patients and potential patients to receive timely care that will reduce the time between the onset of disease and diagnosis and treatment. The sooner patients receive care--and the more we reduce burdens they have accessing care (e.g., cost)--the more likely TBD will not become as devastating as it has been to patients in the past 45+ years.

3. Develop renewed national leadership: Right now, TBD in the United States has a national leadership problem. When working on the Access to Care Services and Support to Patients Subcommittee of the Tick-Borne Disease Working Group in 2018, I was floored by the conflict, mistrust, the old spats that some members could not let go, and the general inability to make meaningful headway. To be clear, these were issues among TBD advocates--not federal officials. How can anyone with any kind of decision-making power take us seriously when we act this way? More importantly, what kind of service are we doing for the patients that depend on us to represent their interests? I got lyme disease in 2006 (in remission since 2010). I finished my ethnographic dissertation in 2016. In the last 15 years, I have seen little progress; in the past five, I have lost most of the hope I had. I respect those who have worked tirelessly for the lives of TBD patients. At the same time, I wonder if it is time for these people to step out of the way for younger, fresher voices to emerge. We need to honor the past while focusing on a future that focuses on solutions, unity, and progress.

Let me be clear: We can do this. TBD understanding and solutions are possible. If the last 16 months has taught us anything, it is that we know what we are capable of. The question now is: what are we willing to risk? Do we have anything to lose? I think not.

Respectfully,

Anna Frost, PhD

Before I get there, for those of you are interested in my basic experience with breastfeeding my child while in remission from lyme disease, it’s pretty simple. I started taking antibiotics (on a rotating schedule every six months) and anti-fungal medication when I got pregnant and then stopped taking them nearly three years later when I stopped breastfeeding just after my child turned two. Neither my son nor I had any complications.

Yet, breastfeeding a child is so much more than transmission of breast milk. In addition to the physical bond I created with my son, the most pronounced experience of breastfeeding was the time spent largely in isolation, usually in a bed or a recliner, usually with my phone in hand trying to connect with the outside world. Even now, a few months after he turned two, 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 have never not put him to bed, and I am even writing this post in his room as he sleeps. The only time I got away from him at night was for a couple hours a few weeks ago when we stayed at a hotel, my niece watched him, and I saw live music a few hundred feet away. In all, 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. Last December, we purchased a cabin in the mountains about an hour from the city. We live here full time in a secluded neighborhood of vacation homes; just one other person on our block lives here full time like us. We also live at the bottom of an unplowed hill, which means we snowmobile or walk to our cars at the top. Consequently, we see few people ever.

Having lyme disease, however, is no doubt the pièce de résistance of isolation. When I got sick, in a few short days, I went from a fit, active 24-year-old to being unable to walk well, extremely fatigued (which was way 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’d get up, make breakfast, and go back to bed. Some days I made it to the shower, and then 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, did crosswords, and looked out the window. Every day was the same, though every day was different, too. I’d 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 me. I walked as slow as I wanted, literally stopped to smell the flowers, eavesdropped on strangers’ conversations, drank 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. Because time stopped, I could finally take a breath and take 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 written off having a child entirely. And the idea of going to work every day appeared to be only a dream. I thought my life was over forever and ever.

Of course, my fears were largely just that. I met my current partner, we had a child, and I have worked. I even got my doctorate. Though I don’t work except for some very part-time freelancing, somehow I have the energy to care for my child nearly 24/7. I’ve heard being a stay-at-home mom is equal to 2.5 jobs, so I suppose I work more than ever now.

A few years ago, I conducted a grounded theory, ethnographic study of five lyme patients in the Pacific Northwest. 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—where patients experience scarce testing, an elusive vaccine, ineffective treatment, and lifestyle restriction—can be informative and relevant for times like the one we’re living in.

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 imply that other illnesses or phenomena are not equally as queer; it just means that these three themes have a differential quality that make them worth discussing. Besides, the themes here might be constructive to other, equally queer phenomena, too, such as COVID-19.

Time

The forever nature of the lyme body is a casualty of “slow violence.” According to Nixon (2011), “[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” (p. 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” (p. 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” (p. 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 (2011) 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” (p. 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” (p. 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:

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, 2011, p. 2) illness, lyme disease seems to be experienced like a slow-moving landslide across spacetimematter. Emotions, conversations, lab tests, relationships, doctors, 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. What is more, all that constitutes the lyme body is the opposite of precision (Nixon, 2011). When it comes to understanding and knowing the lyme body, there are only possibly’s and Ohhhh, yeahhhh’s. 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. Because few assertions can be made about lyme disease, 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-fuck?s 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. Among the sufferers in this study, in fact, there was a felt sense of surprise for continuing to remain alive in a world that seems to minimize and deny their disease at every turn. Accordingly, I was interested in that which makes the “tough” lyme body. For this, I was informed by Thompson et al. (2001) who found that sacrificial bonds at the molecular level may be partially responsible for bone’s toughness. According to Graham’s (2001) interpretation, “[S]acrificial bonds . . . can break and reform, which means the collagen keeps extending and absorbing energy without rupturing the backbone of the structure” (para. 2). In simpler terms, these sacrificial bonds absorb stress. Therefore, it appears that the “tough” lyme body is fashioned by others helping to carry their load emotionally, financially, and physically speaking. In other words, each of the lyme sufferers had a sacrificial bond with one or two people.

The sacrificial bonds the lyme patients had with their friends and family members were created from the absorption of burden and stress that the five lyme sufferers would have otherwise carried alone. Whether as a parent, partner, child, or work supervisor, these sacrificial bonds demonstrate 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. Thus, by absorbing a little more burden, perhaps these friends and family members maintain a level of consistency, stability, and reliability that prevents any party from feeling too out of control. At the very least, the stronger the sacrificial bonds are, the more they seem 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 here in this 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 seem to be pointing 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, 1990). 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, 2003). 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’ (2015) work on paradox, I explore how the ‘weirdness’ of lyme can provoke the “movement of thinking” (p. 49) about the disease.

As a scholar of complexity and management, Mowles (2015) 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 his mind from his body, to the point where he did not believe he 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 (2015) 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” (p. 33). Mowles went on to further say that the person must stay with the mutually negating ideas and thereby notice how it “sends the mind moving” (p. 33) even into uncomfortable spaces. The result of this is “a more intense understanding of the paradox that one is experiencing” (p. 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, 1996, as cited in Mowles, 2015). The process of knowing starts with reflexivity, which is a third-order process and different than reflection. According to Mowles (2015), “[Reflecting is] thinking and feeling deeply about something, possibly our own experience, whilst in becoming reflexive we are bringing that reflection back to ourselves and may be changed by it” (p. 60). In this way, 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, I am suggesting that the lyme community first allows “thinking about thinking” to change them before they make 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

I will conclude this post by asking you some questions to reflect on during your quarantine:

How do you measure time right now?

Who are the people with whom you have sacrificial bonds?

How has your life turned “weird” since COVID-19 broke out? How has it normalized?

Note: To read more about these themes, please click here.

References

Bernstein, R. (1996). Hannah Arendt and the Jewish question. Sage.

Corradi Fiumara, G. (1990). The other side of language: A philosophy of listening. (C. Lambert, Trans.). London.

Graham, S. (2001, December 13). ‘Sacrificial bonds’ may give bone its strength. Scientific American. http://www.scientificamerican.com

Maté, G. (2003). When the body says no: Exploring the stress disease connection. Wiley & Sons.

Mowles, C. (2015). Managing uncertainty: Complexity and the paradoxes of everyday organizational life. Routledge.

Nixon, R. (2011). Slow violence and the environmentalism of the poor. Harvard University Press.

Thompson, J. B., Kindt, J. H., Drake, B., Hansma, H.. G., Morse, D. E., & Hansma, P. K. (2001). Bone indentation recovery time correlates with bond reforming time. Nature, 414(6865), 773-776.

Certainly, there is much to be angry about and much to fear about the fundamental nature of tick-borne disease, as well as the failure of researchers and scientists to gain a proper understanding of the disease and find successful treatment of patients. For those who have been sick for decades, or their entire lives, and with little hope of being “not sick,” you have a lot to be angry about and a lot to fear. For some, this illness has denied you the opportunity to work, the ability to earn money, the dream of having kids, and the ability to physically move your body.

Nevertheless, I have found fear not to serve me well at all. Over time, I discovered how to dig deeper to identify the underlying emotions. Namely, when I am experiencing anger and fear, I am actually feeling powerless. In my dissertation research, I found that perception is key. When patients move beyond anger and fear, they begin to feel powerful. Although on an objective level their circumstances may or may not change, they change. They become more compassionate, slower to anger, less volatile, more accepting. I am primarily talking about the relationship they have with themselves—the self-talk, if you will, and the way they move through the world—but the quality of relationships with others matters, as well. When patients begin to identify what lies beneath anger and fear—Brené Brown would name this vulnerability—they begin to experience peace. The “fight” that was previously in them turns into self-love energy. That energy, therefore, becomes more focused on one’s own internal business, rather than on everything else happening around them. Leaders who lead from fear and anger are an anxious sort. While their intentions are good, the results are often chaotic. I know because I had to learn this lesson myself. In my early 20s, before I got lyme disease, I was a real do-gooder. I spent all day, every day giving myself to others. I remember a friend warning me that I was doing too much and was at-risk for burnout. “But these are all good things!” I responded.

Yet, what exactly is good? Is it good to bulldoze others to get what you want? Is it good to turn myself into a self-imposed martyr so that, at the end of the day, I am only one who feels good about themselves? Am I actually doing good for the people I am supposedly helping? These are questions I have wrestled with a lot since Young Anna was trying to save everyone. What changed me was exactly what I loathed: sickness. Lyme literally slowed me down. There were days I had to nothing to do and nowhere to be. I sold my car because I literally couldn’t put my feet on the pedals. These were also the days before smart phones were ubiquitous—I never owned an iPod and a friend once teased me for taking a walk with a CD player in hand—so I walked with my ears open to all the sights, sounds, and conversations people around me. It was an amazing experience and the most I ever felt alive and connected with others. I was alone in my body, and I was alone in my thoughts. But I was not alone in my experience of illness inside a system that marginalizes the chronically sick. All I wanted was to do good, which I am still doing more than halfway into my 30s. I just didn’t realize most of that good would be directed towards myself. When I seek to do good for others, my reserves burn hot and fast. But when I practice self-compassion, I end up making enough to share with others for a long time.

Motherhood is a responsibility 24/7. It’s not a job really—that implies that I’m getting paid for this. Or that I get breaks. Or that I get to set it aside at 5 p.m. every day. Or that I only do it because I have to.

Rather, being a mom is a way of being. My life has adjusted around this little guy. My actions, my purpose, and the meaning I make are prioritized around him. As such, the mental responsibility is perhaps the most difficult burden. I carry the mental load of knowing when and how much to feed, when to change a diaper, when to put him down for a nap, why he is crying, why he isn’t making any noise (that sneaky bugger!), how many clothes to put on him, which activities to do, if the activities are feasible to complete between naps (and if not, will he sleep in the car?), and on and on it goes. Because we bed-share, I am also responsible for him throughout the night.

This is not to say that I can’t do anything for myself. I actually think we can have purposes with dual outcomes, or dual foci. Motherhood is not an either/or proposition.

That said, the first year (years?) is incredibly important and special. This time is incredibly formative. My partner and I are really lucky that we’ve managed on one income. We’d prefer that living on a single income not last forever, but for the time being it’s OK and worth it. In addition, my son is healthily attached to me, and I am not going to regret quitting my job to be with him. The bond between mother and child (or father and child) is too unique; being with him at this age will have implications for the rest of his life.

No doubt, my parenting choices are made, in part, to correct the mistakes of my own parents. As the fourth child smooshed in the middle of six, I wasn’t exactly given a lot of attention. I’ve done many years of reflection (ahem, counseling) on this, and I really believe I walked out of my mother’s vagina and was like, “Welp, I guess I’ll get this one.” I taught myself to read and was always the best student, the best soccer player, the perfect one. Not that I’m absolutely perfect, but I had to be perfect in order to keep the storm from becoming stormier.

As a result, my largest desire for my son is that he would feel things. Big or small, I hope he knows that he is allowed to feel. I also want to be there to help make sense of these feelings, to help him believe he can get through anything.

Presence. Yes, I want my son to come to my partner and me with any question, concern, or thought. If he is thinking about doing drugs? Talk to us. If he has feelings for a girl? Ask us for advice. Interested in a boy? Oh, yes, please come here, child.

I don’t have parents anymore, and have contact with just a few relatives. I never really had parents though. In fact, I call myself a functional orphan. That means that I wandered through the world by myself even though my biological family was in close proximity. I have thought a lot about my experience in relation to others and I would argue that one difference between me and someone who grew up with a family is that I never felt that I could ask questions. In other words, I could never live in uncertainty because I could not trust wiser, more mature people could or would act as a buffer between me and the world. The message was clear that certain experiences and subjects were off limits, first and foremost my feelings. Moreover, questions about life, such as love, loss, friendship, success, and religion, were actively shut down. Because of that, I learned to believe what I was told without question or critical thought.

To counteract this, and I know this sounds ironic, but I walked through life like I knew everything. In fact, I remember that phrase slipping out while chatting with a friend in high school: “I know everything.” Though I was immediately embarrassed, it was an honest statement, too, because I knew everything I needed to know about my life: that due to the abuse and neglect by multiple family members, my whole world was falling into a deep sadness with few options. In fact, I sincerely believed I wouldn’t live past age 30, so what else did I need to learn? I didn’t need to know anything that would help me live a long, productive, happy life.

Consequently, I walked away from a sure-thing career in journalism. (They pursued me in high school!) I pursued a religion that didn’t encourage critical thinking, preferring to give me all the “answers” instead. I pursued men who wouldn’t reciprocate. And maybe the worst part, I kept my emotions to a minimum; usually, it was best to be ignorant about how I felt at all.

If I knew everything about my world, I could protect myself from the scary world that lay beyond the four walls of my house. This is why I barely went out and socialized. My sisters always teased me for not having a curfew...because I never needed one. Even to this day, I don’t like going to too many new things. For instance, I went looking for an engagement ring in the jewelry store and I nearly freaked out. I know nothing about jewelry and think most of it is gaudy and uncomfortable. So this was not the place I wanted to be. Sometimes new places and experiences are too big for me.

I have grown a lot since that fearful girl at age 6, 16, or 26. I have traveled overseas, earned my doctorate, and HAD A BABY. Those are world-enlarging things.

Still, I often catch myself telling myself that it’s much better to know everything and to keep my world small. Because for a short time, it makes me feel safe.

I want my son to feel safe, too. So I let him believe I know everything. Of course, I know that I don’t know everything and someday he will learn that, too. And someday he will learn things I don’t know.

For the time being, though, it is a really good thing for him to come to me and his dad in time of need and want. To him, his dad and I are his whole world. And that’s OK. As he grows, the world will open up to him. That’s why we read books to him, we play different kinds of music (EDM, classical, Raffi), why we take him on outings as often as our budget and time allow, and why we plan to travel internationally with him. His dad will teach him how to build things, and I will teach him how to write and appreciate art. I will teach him how to share, and his dad will teach him how to use his words.

Motherhood is not just being with my son, but also with myself. The work of caretaking a baby—changing diapers, playing with him, feeding him, and so on—pales in comparison to the inadequacies, insecurities, generational trauma memories, and dysfunction that emerge when becoming mother. Often, the work of it all is exhausting on physical, mental, and emotional levels. Sometimes I cry that I can’t go on. Sometimes I speak a harsh word toward my partner because I want him to be better—sometimes I feel guilty because I am not better.

Sometimes up close and sometimes far away, I would observe the possibility of children. I loved them—I was always told I’d be a good mother—but I grew to put my energy into other things: getting a Master’s degree and then a PhD, my own emotional healing, setting boundaries, creating the Anna Frost I wanted to be, rejecting religion, rejecting family, and engaging in lyme recovery. Always lyme recovery.

A long time before I accepted that religion no longer served me, a Christian pastor told me bluntly, “Don’t get married until you’ve dealt with your past.”

I still haven’t gotten married.

And I have dealt with my past. I deal with it everyday, as well.

But I don’t think marriage is ever the goal. Neither is having a baby.

Neither is career success.

Or earning a doctoral degree.

Or even recovering from a chronic illness.

All of those things are wonderful and reasons to celebrate and, yes, they provide opportunities I wouldn’t otherwise have. I can have a baby precisely because I’ve been in remission for more than seven (!) years and because I have not had a health setback in three years. A week before I happily discovered I was pregnant, I had deadlifted 300 pounds and snatched 35 pounds. Indeed, my body is capable and good—”I am enough,” as I like to say and scrawl on my skin.

Yet, the goal is neither just one thing nor just one thing inside time. Because time is always slippery.

If there is a goal, it is a moment, an experience—or having an experience rather. It is the past, present, and future all experienced in one event. When it comes to having a baby, it is the time when I wanted four kids, then two, then one, then one-half, then none at all. It is the time I watched my friends interact with their children. It is the time I dropped my baby nephew on his head and was sure I caused him forever brain damage. It is also the time I shared that fear with my friend, a mother of three young boys, and she laughed.

My child is both here and not-here. Based on their behavior in my womb, I might guess what their personality may be, but I can only imagine at this point. I can collect clothes, books, and diapers, but the way in which they will emerge is the experience. And that experience will be turned into a collection of experiences—and of baby, partner, and me collectively having that experience, too

If there is a goal, it is the intention of experience within slippery time where events constantly fold into one another. Some will forever get lost to the annals of memory, and others will appear and reappear whether I like it or not. As the same friend of three young boys recently told me, the intention of experience is believing I’m not doing parenting wrong. It is accepting that my career trajectory may be a little atypical. It is knowing that I always have power (always had it, in fact), but there will always be phenomena out of my control, too.

Though some misunderstood the principle of the experiment as a kind of “blurring,” Schrödinger’s experiment instead suggested the presence of an unclear or contradictory reality, according to Barad (2007, pp. 275-278). Barad suggested that this unclear or contradictory reality did not mean that the cat was either: alive or dead; alive and dead; or partly alive and partly dead. To perceive the cat paradox in this way would be to engage in a binary affair. Instead, the cat’s fate was literally in an entangled state: the fate of the cat was entangled with the fate of the atom.

Further, what Barad (2007) found “most disturbing” (p. 280) about the cat paradox experiment was that it illustrated the nature of the transition of the state of the cat during the process of observation. The value of the object, therefore, was no longer one thing or another, but rather what Colebrook (2007) called “a becoming” (p. 78). When one can liberate lived experience from concept, reality becomes less about time and more about iterative transformation (p. 78).

This understanding of transformation in relation to time, reality, and being is an excellent way to think about and transcend the binary affairs in lyme studies. The issue of serological testing is one binary affair that can subsequently lead people down a rabbit trail of other binary affairs, such as diagnosis, treatment protocols, and the issue of chronicity. Focusing on testing for now, serological tests look for antibodies, which is considered to be a sign of active infection. Therefore, some members of the lyme community interpret a negative test result to indicate that no active infection exists (Lantos, 2011, p. 790). To many in lyme studies, the case would be closed and patients “crying lyme” are actually suffering from another illness. However, physicians who disagree with the conclusion of these negative results may go ahead and diagnose and treat lyme disease anyway. They cite uncontrolled studies with high reporting biases for the reason why they cannot exclude the possibility that patients have lyme disease (Lantos et al., 2010a, pp. 3-4; Johnson & Stricker, 2010a, p. 1109). Ironically, those who interpret negative test results to be not-lyme point to those same studies as sufficient evidence—despite simultaneously believing case studies, anecdotes, and patient testimonials are sloppy and unscientific practices.

In any case, what many members of the lyme community from both sides of the issue of serological testing may fail to remember is that lyme disease in itself is untidy. For instance, consider one of the main sticking points surrounding diagnosis: active infection. Recalling Schrödinger’s cat paradox experiment, imagine that the cat is the lyme body and the radiation atom is a lyme pathogen. If the fate of the lyme body is entangled with the fate of the pathogen, naturally many questions arise: What exactly is active infection? How does active infection manifest or not manifest as observable sickness? Do the contents of a vial of blood drawn at one particular minute of one particular hour of one particular day indicate a definitive presence or absence of infection? Moreover, what is one to do with evidence that indicates that different labs yielded different results from the same specimen (Luger & Krauss, 1990, p. 762)? And what is one to do about evidence that showed the same lab can yield drastically different results from the same specimen (Bakken et al., 1997, p. 537)? Also, how do experiences, traumas, medical treatments, naturally aging biological bodies, sex, geographic location, environmental factors, and so forth, intra-act with the lyme pathogen over time? Like the cat in the box, at any given moment, the fate of the lyme body is in an entangled state with the fate of the infection.

To help flesh this out a bit more, it helps to explore one aspect of quantum physics known as a “quantum leap.” These leaps are not jumps in the sense that an electron moves from one orbit to another on one continuous trajectory; the electron does not move from a here-now to a there-then, as Barad (2007) put it. Instead, what makes the quantum leap “queer” (p. 182) is that no determinacy exists as to when and where the electron jumps, which makes “continuity and discontinuity . . . crucial to the open-ended becoming of the world,” Barad said (p. 182). In this way, lyme studies would flourish if it kept an open-ended attitude towards the lyme body and even the pathogens that infect it. Though technology and observation will help mysteries emerge, the body will always be there to lead the way through and make sense of them.

For instance, if one were to take a clinical history of a typical lyme body, one would often find a history of symptomatic flare-ups (U.S. Senate, Committee on Labor and Human Resources, 1993, p. 37). In my observations, many lyme sufferers experience on average about 10 years of illness with many flare-ups scattered throughout that time. Because the symptoms vary in intensity and length and appear as other diseases or illnesses, both medical practitioners and sufferers tend not to perceive all those episodes being part of a single disease. Usually, around the 10-year mark, these sufferers no longer have episodes of perhaps a week or maybe a month or more. Instead, their flare-ups become one, long continuous bout of symptoms. Having exhausted all other possible etiologies, bank accounts, physical strength, and relational capital, somehow they find the last-known person who seems to listen to what their body is communicating: the lyme-literate doctor.

In conclusion, transformation and quantum leaps in spacetimematter challenges the expectations about the certainty of lyme knowledge. As such, that a person can be suffering from lyme disease in spite of the pre-arranged script determined 40 years ago should be all the validation one needs for the insufficiency of current lyme knowledge.

References

Bakken, L. L., Callister, S. M., Wand, P. J., & Schell, R. F. (1997). Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program. Journal of Clinical Microbiology, 35(3), 537-543.

Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Durham, NC: Duke University Press.

Colebrook, C. (2008). On not becoming man: The materialist politics of unactualized potential. In S. Alaimo & S. Hekman (Eds.), Material feminisms (pp. 52-84). Bloomington, IN: Indiana University Press.

Johnson, L., & Stricker, R. B. (2010a). Final report of the Lyme disease review panel of the Infectious Diseases Society of America: A pyrrhic victory? Clinical Infectious Diseases, 51(9), 1108-1009. doi:10.1086/656690

Lantos, P. M., Charini, W. A., Medoff, G., Moro, M. H., Mushatt, D. M., Parsonnet, J., . . . Baker, C. J. (2010a). Final report of the Lyme disease review panel of the Infectious Disease Society of America. Clinical Infectious Diseases, 51(1), 1-5. doi:10.1086/654809

Lantos, P. M. (2011). Chronic Lyme disease: The controversies and the science. Expert Review of Anti-Infective Therapy, 9(7), 787-797. doi:10.1586/ERI.11.63

Lindley, D. (2007). Introduction. In W. Heisenberg, Physics and philosophy: The revolution of modern science (pp. vii-xxi). New York: Harper Perennial.

Luger, S. W., & Krauss, E. (1990). Serologic tests for Lyme disease. Archives of Internal Medicine, 150, 761-763.

Schrödinger, E. (1983). The present situation in quantum mechanics (J. D. Trimmer, Trans.). In J. Wheeler & W. H. Zurek (Eds.), Quantum theory and measurement (pp. 152-167). Princeton, NJ: Princeton University Press. (Reprinted from 1980, Proceedings of the American Philosophical Society, 124, 323-338)

When I get asked what my dissertation is about, most likely I say something about it being a twofold endeavor: on one hand, it is an ethnographic study about lyme sufferers, and the other, I am questioning what lyme disease is at all. Both are crucial to knowing lyme. That I may be the only qualitative lyme disease researcher in the world* says everything we need to know about how much we really do not know about patients. Further, “lyme disease” is really an umbrella for multiple infections and manifestations. When we talk about lyme in the United States, to name just one country, the Northeast manifestation of lyme is most likely different than the Southeast manifestation, which is most likely different than the Northwest manifestation. This has to do with research in the past six years that has discovered multiple vectors (not just Ixodes scapularis) carrying various infections (not just Borrelia burgdorferi). Given that 330,000 Americans contract lyme disease each year – six-and-a-half times more than HIV – this should indicate that lyme is something the scientific community has yet to grasp.

My three-minute** elevator speech is all true, but one of the most difficult parts about my dissertation to get across is the inherent, non-binary relationship between knowledge and being. Traditional scientific method says we can know an object from the outside looking in. For instance, we can determine a chair is a chair because...wait for it...it is a chair, and it was always a chair!

However, quantum physics says, Uhh, who decided it was a chair? Properties are not “out there” waiting to be discovered by humans. As evidence, Bell’s Theorem showed in experiments that (a) no hidden or inherent properties exist, and (b) action taken at one location can affect objects in another location, which is a phenomenon known as nonlocality.

Moreover, matter and meaning come alive thanks to the properties of objects having a “superposition,” which is an ontologically indeterminate state of properties. In other words, properties are unconsciously known to the human. In that vein, my hero, Karen Barad, PhD, a feminist physicist at UC-Santa Cruz, proposed the necessary inclusion of materiality and discourse, which debunks the idea that humans arbitrarily determine the properties of an object.

“[T]he specific nature of the material arrangement of the apparatus is responsible for the specifics of the enactment of the cut,” Barad said (p. 264).

The “cut” Barad was referring to is the “agential cut,” which is comprised of the material arrangements that provide the possibilities for humans and nonhumans to make decisions. To “cut” does not mean to separate, but rather to understand what holds something together without sacrificing the difference.

Furthermore, making an agential cut is located within a process that Barad called agential separability, which are acts comprised of both differentiating and entangling. Schrödinger (as in “Schrödinger’s cat”) once explained: 

“When two systems of which we know the states by their respective representatives, enter into temporary physical interaction due to known forces between them, and when after a time of mutual influence the systems separate again, then they can no longer be described in the same way as before, viz. by endowing each with a representative of its own. . . . By the interaction the two representatives [or qwiffs] have become entangled. To disentangle them we must gather further information . . . although we know as much as anybody could possibly know about all that happened.” (p. 189)

Objects are not separate entities with independent, self-contained existences. While differentiation is to disjoin, entanglement is to premise relationship on obligation. As such, objects necessarily relate to observers or apparatuses, and vice versa.

So what does this all mean to me in practice today?

I would write my dissertation differently. One year on, I’m now in my first ever committed relationship. Timespacematter is different now! While I am no longer sick, I do understand what many of my research participants were talking about and experiencing in their own relationships. I now know that relationships are already difficult between two relatively healthy-crazy people, and they are infinitely more complex when one of those healthy-crazy people is sick without any end in sight.

Though lyme patients are still absent from the national conversation about policy and knowledge, I did something to change that. Along with a team of patients and caretakers, I organized the NW Lyme Patient Workshop, which put the power into the individual’s hands to create an ease toward pathways to knowledge and understanding about lyme disease. The March 2017 event was successful, and there is discussion about doing it again. Presentation recordings are now up on the site.

One’s meaning of the disease is powerful. I get far too many questions and see far too many articles about preventing lyme disease. If only you just wear bug spray. If only you pull your socks up over your pants. If only you avoided nature. Rhetoric like this is borne from the binary scientific method I mentioned earlier. It completely misses the relationship and the “intra-action,” as Barad puts it, between human, animal, and nature inside time and space.

In addition, the rhetoric also sidesteps the real problem of when people contract lyme disease and, therefore, what they can do to reduce the effects of it. Here, I am referring to health. Though patients may not be able to control the existence of an infection(s) in their body, individuals do have the power to mitigate its effects. Nutrition, movement, sleep, delimiting stress, and cultivating healthy relationships are keys to getting this disease under control.

I am not saying recovery is easy or follows a linear path. In fact, it is most precise to say that lyme disease treatment and recovery is complex. To call it complicated would assume there are just a lot of steps in a straight path. Not so!

Indeed, lyme disease recovery is actually many little decisions made in moments:

The moment to get up out of bed.

The moment to take a shower.

The moment to take a walk.

The moment to turn around for home.

The moment to eat food that heals.

The moment to say “no” to that toxic person.

The moment to laugh.

The moment to fuck what should be and do whatever it takes to get well, even if it puts you in debt.

Because without your health, what do you have?

The participants in my study who are on their way to optimal health are the ones who choose happiness at least 80% of the time. They have realized they have more control than they realize; the control they give to lyme disease is on them. Though the disease may bring limitations for the rest of their lives, they have decided how they want to make meaning of their disease. As my favorite philosopher, George Herbert Mead, says, individuals will act towards that which has meaning for them.

Hence, the patients who are getting healthier, relatively speaking, figure out what is meaningful and then act on it.

Finally, this is not just about lyme. Lyme disease is just one example of many diseases and ambiguous events and circumstances in which we all live every day. How we navigate unknowingness is what interests me, and I look forward to writing about this more. Until then, be well!

-Anna

*I’ve checked with my fellow researchers in the U.S. and Canada.

**OK, 30 minutes.

References

Barad, K. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Durham, NC: Duke University Press.

Barad, K. (2008). Posthumanist performativity: Toward an understanding of how matter comes to matter. In S. Alaimo & S. Hekman (Eds.), Material feminisms (pp. 120-154). Bloomington, IN: Indiana University Press. (Reprinted from Signs, 28(3), pp. 801-831, 2003, Chicago, IL: The University of Chicago)

Barad, K. (2010). Quantum entanglements and hauntological relations of inheritance: Dis/continuities, spacetime enfoldings, and justice-to-come. Derrida Today, 3(2), 240-268. doi:10.3366/E1754850010000813 (pdf)

Mead, G. H. (1934). Mind, self, & society. Chicago, IL: The University of Chicago Press.

Schrödinger, E. (1935). Discussions of probability relations between separated systems. Cambridge Philosophical Society Proceedings, 31, 555.

Time

“Time” was the most frequent word used in the primary participants’ first interviews. (See Figures 1 and 2.) In fact, whether the interview subjects were conscious of it or not, the concept of time was on the minds of all the participants. They spoke about time in terms of taking medicine, sleep, activities (either shortened, skipped, or requiring hours- or days-long recovery), their illness trajectory, the length of their illness, anxiety, and even in terms of meeting their medical insurance deductibles. In his journal, Strider wrote, “Time is getting short, I’m feeling the heat, the stakes are – well, everything – and I object to that. I object to that. Dammit, this is not right. Rage. Rage. I want to punch something.” The way Strider spoke about his experience seems almost like his adversary is less about lyme disease and more about the clock. Indeed, when Lizzie asked her fellow participants over dinner during the weekend gathering if they would go back in time and choose to have lyme disease again, the people who declined were those who had suffered from lyme disease for nearly three decades. By now, they had lost half their life, and due to the effects of aging and the way the infection had systematically devastated their bodies, there was little reason to believe they could or would achieve full recovery. To be specific, there was little hope they would hold down a full-time, stable, and/or economically gainful job again. The best they could hope for was the ability to engage in some of their hobbies and pursue a self-actualized, humble, simple life.

On the other hand, those who would choose lyme disease again were those who were in their 30s or younger, who had suffered from lyme disease for no longer than 13 years, and were relatively functional. Being “relatively functional” does not mean that these certain sufferers lack health complications or are already in remission. Indeed, I presume a lyme-literate doctor would deem some of them to be currently “unwell.” Nevertheless, finding a diagnosis and relatively successful treatment at a younger age appears to enable these folks to assimilate lyme disease into their life. Because they know what they are suffering from and – crucially – because they have the economic and social resources to treat it, they feel more empowered in their relationship to the disease. Those who have had lyme for far longer without knowing what they had and/or the resources to treat it feel much more victimized by the disease. Despite young age and plentiful resources, however, all of the participants and even many of their friends and family members felt like time had been stolen away from them. They believed the time they lost suffering from lyme disease could have been better spent following their dreams, cultivating deeper, more intimate relationships with loved ones, traveling, and so on. In any event, time means something different depending on one’s relationship to the disease.

Figure 1. This word cloud shows the 40 most frequent words in the primary participants’ first interview. The top five most frequent words were time, back, lyme, going, and pain.

Figure 2. This cluster analysis is based on Jaccard’s coefficient and supplements the aforementioned word frequency analysis. Here, the central quality of time is seen in relation to the other most frequent words in the primary participants’ first interviews.

Slow Violence

Regardless of the quality of the relationship to time, the lyme body nevertheless has a strong relationship to it. Indeed, at the same dinner table during the weekend gathering, I asked all of the participants how long they expected lyme disease to be in their life. Without a moment’s hesitation, Lizzie, Strider, and Brooke blurted out, “Forever.” Lana and Jae nodded their heads in agreement. As such, the forever nature of the lyme body is a casualty of “slow violence.” According to Nixon (2011), “[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” (p. 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” (p. 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 such, the consequences of this radioactive material have been indiscriminate and incapable of being judged. According to Nixon, slow violence is “incremental and accretive” (p. 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 (2011) 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” (p. 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” (p. 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:

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.

Ambiguous Narratives

Speaking of narratives, it appears that lyme disease has significantly altered the perception of time and the subsequent storytelling of the illness. For instance, in the middle of sharing her experience of her daughter’s journey finding successful lyme treatment, Lizzie’s mom interrupted herself:

There’s so many aspects. A lot of it I do forget. And then I’m like, ‘Ohhhh, yeahhhh! That happened.’ You know, it just becomes this big jumble of so many things happening because it was such an active part of her life – just [being a] senior in high school, you know, getting ready for college – there was so much going on [that] you forget the little parts.

Indeed, over the course of the study and especially into the weekend gathering, I observed that the participants’ narratives varied quite a bit. I noticed some core details were omitted from their narratives, while other details were altered. In fact, on a few occasions, I found myself correcting their stories on the account of my own research.

Ambiguous narratives have significant repercussions in the quality of lyme diagnosis and treatment. Calling herself a “total novice,” Lana’s Naturopath was admittedly confused by Lana’s long illness history. In addition to being frustrated by the way Lana’s memory seemed to be inconsistent, her doctor had either no evidence or confusing evidence as to which infections were truly in Lana’s body. For instance, her doctor had been unsuccessful in obtaining the lab results of her Igenex test taken several years prior. Her doctor did, however, have the results of spirochete identification from a dark field microscope, but the quality of that test was debatable, she said.

Depending on who you talk to, that’s the gold standard, or the spirochete generally will hide really rapidly and be very difficult to identify on the dark field. So I don’t know. I don’t have those original notes. I have the notes from the next doctor speaking about the identification of the spirochete. . . . So [Lana’s] whole story is very confusing and it’s long. She’s been sick for a long time, so it’s hard to know an exact linear pathway, and that’s one of the things we’ve been struggling with. The last time she left – actually, I think the past two times she’s left – I’ve given her, “These are the labs I want you to get through your Medicare doctor. Even if we get a negative Western blot, at least I have something, you know.” So in terms of what we’re dealing with, all I really know is Borrelia, but I’m sure with her other symptoms that we have other things going on just because based on her symptoms, you can sort of identify what matches what, you know, and then also the cycling of symptoms: when they’re better, when they’re worse.

Coincidentally, Lana got a Western blot lyme disease test taken when she went to the ER for a sinus infection. However, according to Lana, her Naturopath ended antibiotic treatment for lyme disease when the Western blot yielded a negative result.

Besides knowing what to diagnose sufferers with, the condition in which a patient narrates their illness story appears to be highly significant to the quality of response from the establishment. As the only participant to be a minor when she first became sick with lyme disease, Lizzie’s relationship with the medical world was initially problematic. Since Lizzie was 17-years-old at the time, she naturally turned to her pediatrician, but it became quickly obvious Lizzie’s illness went beyond his purview. Next, Lizzie visited an internist where she discovered she had the opposite problem: there, the doctor assessed her as a typical teenager with typical teenage mood swings. According to her mom,

As a 17-year-old, it’s kind of like, ‘Oh, this is a high school kid. She doesn’t know what she’s talking about. Oh, you know, another ache and pain.’ I don’t think they took her as seriously as they should have, and that’s where I had to try and step in.

In fact, there were numerous times in the first few years of Lizzie’s illness in which her mom spoke up for her daughter, even to the point of giving the doctors ultimatums. Over time, an aging Lizzie has positively changed the quality of the relationships with her doctors, Lizzie’s mom said. Where at age 17 doctors would make Lizzie feel inferior, now at age 20 her doctors seem to approach her as an equal. Yet, age alone did not solely change the quality of these relationships. The fact that Lizzie’s parents intentionally “raised her up in this illness” seemed to give Lizzie the confidence she needed to approach her doctors. According to Lizzie’s mom,

As a mom, I had the sense that this wasn’t gonna be a short, little thing. This was going to go on. And I knew that I wasn’t going to be there because now she’s a senior and what’s life gonna be? If she does go to school, that’s a big part of the discussion: “You’re on your own.” So I tried to consciously step back. I will prep her before her appointments. I would tell her, “This is what you need to say. These are the questions. They might not answer you and they sometimes can be very difficult, but these are the things you need to go in there. Don’t be in a rush. Get them to answer your questions.” And then I would back off. Some of the appointments I would stay in the lobby. I made a conscious decision. I wanted her to figure out how to deal with this stuff, but I knew that if I had to, I could go later or call them. I wanted her to know not only that what to do and what to ask and how to deal with this, but to get that self-confidence. It’s night and day from when we started. Part of it is she feels better. It’s hard to do when you feel like crap, you know, but she has gotten very good at knowing that she has a voice and when you go into a doctor, you don’t have to take, ‘Oh, there’s nothing wrong with you.’ No. There is. She’s gotten much better at being assertive and going in. I would tell her to make a list and she would literally go in with a pad and she would say, “Mom, this is so…” and I said, “No, listen. You’re the consumer here. When they go home at night, whether you feel better or not doesn’t affect them. It affects you. You’re the one that needs answers and needs results, not them. So you need to make them work for you.”

Young Adulthood

There is a very good reason why age matters in lyme disease. As Figure 3 illustrates, just 11 years separates the ages of disease transmission. In other words, at 17-years-old, Lizzie was the youngest person to contract lyme disease, and at age 28, Brooke was the oldest. The average age of transmission is 24.

Figure 3. This chart compares the participants’ absolute ages (as of the beginning of the study) with the age they transmitted lyme disease. Spanning from age 17 (Lizzie) to 28 (Brooke), there is just an 11-year gap among all ages of transmission, and the transparent box running through the center of the chart indicates this. Their average age of transmission is 24. Furthermore, the length of illness spans anywhere from three years (Lizzie) to 28 years (Strider) (again, calculating from the beginning of the study). Their average length of illness is 15.4 years.

These data indicate that lyme is a “young person’s disease,” a term Lizzie’s doctor first suggested actually. Of course, exceptions exist, and for at least Lana and Strider, they wonder if they actually contracted lyme as teenagers. In fact, nearly all of the participants genuinely leave the door open, so to speak, for their lyme transmission to have occurred earlier than they know. The “age of transmission,” therefore, has more to do with the “age of first lyme sickness” than with transmission. Unless and until the sufferers confirm the exact moment in time when they were able to locate the exact vector that was on their bodies and was carrying the lyme infection, it is nearly impossible to make a definitive assertion about transmission. In this way, “transmission” is a bit of a misnomer, but I use it anyway because it is worth considering the ways that transmission in young adulthood could potentially impact the length of time between transmission/sickness to an appropriate diagnosis, subsequent treatment, and length of illness all the way until full remission.

Four years before the ACA legislation was passed, the National Institute for Health Care Management (NIHCM) reported that even though young adults were at-risk for a variety of health conditions, they were the least likely to have medical insurance compared to all other age groups (Brindis, Mulye, Park, & Irwin, 2006). In fact, in the three years just prior to the ACA becoming mandatory, 25.9% of young adults ages 18-24 were uninsured (Cohen & Martinez, 2015). The NIHCM attributed this to the propensity for young adults to have lower-paying entry-level or part-time jobs (Brindis et al., 2006). As such, young adults were less likely to receive routine care from a consistent practitioner, but more likely to use the emergency room as their primary source of care. Furthermore, the mortality rate among young adults ages 20-24 was higher than teenagers ages 15-19.

One of the major implications for passing the ACA in 2010 was that it would enable young adults to be insured by either staying on their parents’ insurance up until the age of 26 or applying for their Medicaid if they had an income greater than 133% of the federal poverty level (Monaghan, 2014). This policy decision seems to have proved effective because in the first quarter of 2015, the rate of uninsured young adults ages 18-24 had decreased to 15.4% (Cohen & Martinez, 2015). This was lower than ages 25-34, which had an 18.3% uninsured rate, but higher than ages 45-64, which had a 9% uninsured rate. According to Monaghan (2014), however, having insurance does not necessarily correlate with young adults having a usual source of care. The author blamed this largely on: scheduling issues, the lack of medical training on young-adult issues, the lack of preventative services, and the poor integration of mental and behavioral health services.

Unfortunately, chronic autoimmune diseases, including lyme disease, appear noticeably absent from Monaghan’s (2014) list of problems for gaining a usual source of care. If lyme disease demonstrates anything, it is that it is absent from nearly everyone’s radar. As the five sufferers in this study have indicated, their “depression” was the result of lyme disease. So, too, was their alcoholism, smoking, or drug use to ease body pain. Likewise, cardiac issues, circulation issues, tumors, cognitive issues, urinary tract infections, sinus infections, and so forth were all related to lyme disease. This goes to show that despite Monaghan’s effort to address “young people’s issues,” lyme disease as an etiology is still absent from the list of possibilities and potentialities. Accordingly, medical practitioners are still more likely to misdiagnose lyme disease as any number of diseases and syndromes.

In all, young adults appear to be the most financially and socially vulnerable. Already having few financial resources, they are also just learning to navigate the health care system on their own. With Lizzie’s mom being a nurse and her dad being a cancer researcher, they were both conscious about teaching their daughter to ask for what she needs, but not everyone has a strong and informed support system as Lizzie did. Lana was essentially emancipated at age 15, then had her first child at age 19; Brooke was married and living hours away from her family of origin; Strider had just left the military while wandering the country and even living in a shack for a while; and Jae was slowly moving across the country away from her family in the pursuit of promotion after promotion. It does not mean that any of them did not know how to go find a doctor. In fact, their problem might have been visiting too many doctors and having the proverbial door closed in their faces in almost all of them. Therefore, one of the problems that lyme disease illustrates is the lack of doctors who are competent to become a lyme sufferer’s “usual source of care.” As long as doctors are ill-equipped to treat lyme disease from diagnosis to remission and beyond, sufferers without financial and social resources will continue to be sick for decades afterward. Without a “social net” in young adulthood, lyme sufferers are bound to become increasingly incapable of rallying the financial and social capital necessary to diagnose and treat lyme disease properly and thoroughly. Without early intervention, over time they will most likely earn less, contribute to society less but demand more, and have weaker social networks.

Setting aside the problem with the “usual source of care” for a moment, the data from this study suggests that the younger a person is at the age of transmission, the faster they receive thorough treatment. Additionally, better financial and social resources will probably help them more fully recover at a faster rate and more cheaply. Take a look at the participants here: Lizzie was 17 when she got sick and 19 when she began to receive thorough IV treatment for about 16 months. Four years after first getting sick, she had been entirely weaned off of IV medication and was on her way to completing oral antibiotic treatment. It seems likely she will go into remission sometime in 2016. In addition, her support system is one of the strongest I have ever seen. In addition to excellent medical insurance and her father’s high income, her family and friends have supported her throughout. Not only do they all view illness as a part of life, but they also expect Lizzie to take responsibility for her illness. They will not allow her to fall victim to the disease.

In contrast, Brooke and Jae are in their mid-‘30s and have been sick with lyme disease between eight to 12 years. Brooke began receiving treatment about two-and-a-half years after getting sick; for Jae, it was about 11 years. Brooke got three years of treatment, while Jae got just three or four months. Either way, both ended their antibiotic treatment somewhat on a whim and certainly without long-term planning. In both cases, they drifted away from their treating doctors. Regardless of the reasons, they limped along while still experiencing complications along the way. Although their health emergencies may not have been as debilitating as they used to be, both Brooke and Jae are far from remission. Unless they receive stronger intervention, I would not be surprised if they drift for several more years. On the more hopeful side, both of these women have financial and social resources, generally speaking. While extreme medical costs would most likely cripple them, they have family that would probably support them if it came to that.

The final set of sufferers are those who have been ill for a couple decades or more, most likely have not received a diagnosis until deep into it, may or may not be getting treated, and have few financial and social resources. Lana and Strider are both 54 and had been ill for 27 and 28 years, respectively. Both are now on Social Security Disability (SSD). Medicaid/Medicare severely limits the doctors they could see; most likely, these doctors will not or cannot treat lyme disease. Strider had some savings, which enabled him to pay for his lyme-literate practitioner out of pocket. Also, as a nurse, he knew how to work the medical system in his favor, so he found relative success in the traditional medical system. As a veteran, he was also considering entering the VA system to receive treatment. In his case, Strider’s intellectual resources have benefited him greatly. Lana, on the other hand, had no financial resources. Living on a fixed income, even the cost of her $87.50 Naturopath was too expensive for her. In addition, Lana had few friends and family members because she chose not to entrust them with her needs. Strider used to alienate his friends and family, too, mostly as the result of the neuropsychiatric manifestations of lyme disease. However, in the course of the study, Strider was making ample effort to restore those relationships. He decided to help others fix their homes, figure out better ways of communicating with his wife, and mentor one or two younger men. In all, there is probably little hope that Lana and Strider will fully recover because their medical issues are deep and extensive. Though they cannot change the length of their illness or their age, Strider’s story indicates that his quality of life increased once he decided to change the quality of his social resources.

The Things They Carried

Strider’s case is an excellent example where an unconscious self-narrative significantly impacted his being-in-the-world. Indeed, the presence of ambiguous narratives, even to the point of absence of lyme disease diagnosis and treatment in young adulthood, goes to show that we cannot neglect the narrative the lyme body tells itself and, therefore, tells the world. As such, sufferers embody their self-narratives across time and space, too. For instance, Brooke admitted during the weekend gathering that her participation in the study gave her a chance to finally stop and reflect on her illness experiences all the way back to the beginning eight years prior. Until the study, she had given no thought to her illness experience. Even though she attends yoga, she preferred classes that keep students moving all the way throughout. The moment she is forced to lie down and be quiet is the moment her mind starts racing about all of the tasks she has to do back at home or work. Brooke’s narrative, I must not think, only do, correlates with her attitude about herself as patient. She is more comfortable with getting in and out of the doctor as quickly as possible, as well as leaving with a clear, practical, and economical plan of action. When those expectations are not met, she tends to do what she was doing at the end of the study, which is to proclaim she is “fine” if and when she is obviously “not fine.” It came as no surprise to me, then, that, in jest, Brooke admitted she was glad the study was over so she could go back to “not thinking” about her illness. By then, I obviously cared for her well-being, so I did not hesitate to respond by earnestly suggesting she seek psychotherapy in order to continue the self-reflective practice that she left at the end of the study.

On a slightly emotionally heavier level, all of the participants initially stated their reason for doing the study was to gain the opportunity to share their self-narratives, no matter how others perceive them. Being very aware that their voices were largely rejected at the personal, organizational, and global echelons of influence, this study gave them the chance to share their stories in faith that it would accelerate knowledge of lyme disease, help other sufferers, and maybe even help themselves. By the end of the study, however, it appeared that all of the participants were surprised that the study was less “reporting” the facts of their disease and more about discovering who they were in the midst of, or perhaps in spite of, their suffering. Thus, the study became less about verbal discharge and more about gathering the meaning they made in their lives. “It feels good to share [my story],” Jae said weeping. “It’s made me feel very human.” At the very end of his last interview, Strider, too, had also come to the conclusion that his story was much more than the culmination of facts.

The reason I participated in this study was that the importance of my experience is not going to die with me – to make a mark on this world so that my suffering means something. [He is in tears and trembling at this point.] That’s the important thing because the pain – it’s gotta be worth somethin’. It’s gotta mean somethin’. I gotta write it down and people gotta listen and this has gotta change. I can’t see a nation of people suffering the way I have. Nobody is bad enough to deserve what I’ve been through and your study is gonna help change that and I’m obliged to do it by who I am. This has to happen. That’s the truth. [Strider gives me a fist bump.]

Both Jae and Strider indicated that telling one’s self-narrative was less logos and more legein (Corradi Fiumara, 1990). The more the lyme body shared, the more other bodies listened; the more other bodies listened, the more the lyme body realized it was safe and did not need to retreat into emotional and/or physical isolation; the more the lyme body stopped retreating, the more it remained inside the truth; finally, the more the lyme body remained inside the truth, the more other bodies listened.

In Summary

As an “incremental and accretive” (Nixon, 2011) illness, lyme disease seems to be experienced like a slow-moving landslide across spacetimematter. Emotions, conversations, lab tests, relationships, doctors, 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. What is more, all that constitutes the lyme body is the opposite of precision. When it comes to understanding and knowing the lyme body, there are only possibly’s and Ohhhh, yeahhhh’s. 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 else, too. Because few assertions can be made about lyme disease, 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-fuck?s 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.

References

Brindis, C., Mulye, T. P., Park, M. J., & Irwin, Jr., C. E. (2006). Young people’s health care: A national imperative. Retrieved from National Institute for Health Care Management website: www.nihcm.org/pdf/YoungPeoplesHCFINAL.pdf

Cohen, R. A., & Martinez, M. E. (2015). Health insurance coverage: Early release of estimates from the national health interview survey, January–March 2015. Retrieved from Centers for Disease Control and Prevention website http://www.cdc.gov/nchs/data/nhis/earlyrelease/insur201508.pdf

Corradi Fiumara, G. (1990). The other side of language: A philosophy of listening. (C. Lambert, Trans.). Routledge: London.

Monaghan, M. (2014). The Affordable Care Act and implications for young adult health. Translational Behavioral Medicine, 4(2), 170-174. doi:10.1007/s13142-013-0245-9

Yet, research in the past five years suggests there may be as many as five additional types of Borrelia infecting humans in North America:  B. americana, B. andersonii, B. mayonii, B. bissettii, and B. miyamotoi (Chowdri et al., 2013; Clark et al., 2013; Girard et al., 2011; Pritt et al., 2016). Furthermore, this list of infections does not include other co-infections that are associated with lyme disease in North America, including: Babesia, Ehrlichiosis/anaplasmosis, Bartonella (Ba.) henselae, Ba. doshiae, Ba. schoenbuchensis, Ba. tribocorum, Mycoplasma, Chlamydia, Rickettsia, Tularemia, and Brucellosis (Chowdri et al., 2013; Clark, Leydet, & Hartman, 2013; Clark, Leydet, & Threlkeld, 2014; Girard Fedorova, & Lane, 2011; Horowitz, 2013; Hyun, n.d.; Pritt et al., 2016; Vayssier-Taussat et al., 2016). For years since Burgdorfer’s discovery in 1982, patients, lyme-literate providers, and advocates have been complaining that something in addition to B. burgdorferi is infecting humans, but few have been listening to them.

In her memoir, Polly Murray (1996), the woman who initially called the Connecticut State Board of Health in 1975 to report what would eventually be known as lyme disease, described the ease in which these researchers seemed to discover and name lyme disease:

“Over the years I have either experienced myself (or heard described by others afflicted with Lyme disease) of many manifestations before they were “discovered” officially and written up in the medical literature. Thus, it is clear to me that among those living with a disease there may be knowledge of the disease which goes beyond present medical understanding; what is “discovered” eventually by physician researchers may have been known to the patients for some time.” (p. 239)

Researchers seemed to disregard what the patients and first observers knew and understood about the disease living in their own bodies.

Not only did researchers decide they had discovered the origins of lyme disease and named it so, they also decided what exactly were lyme knowledges and understandings (Lantos et al., 2010). For example, just five years after Steere et al. (1977) first published their findings from Lyme, Conn., and the surrounding area, and only one year after Willy Burgdorfer and his team found and identified what became known as B. burgdorferi (Burgdorfer et al., 1982), medical doctor Edward D. Harris, Jr. (1983) opened his editorial by declaring, “Lyme disease belongs to the people” (p. 773), but then spent the rest of the article giving credit to the researchers:

“There is something very satisfying about the progress that has been made since the summer of 1975, when the Lyme mothers recognized a pattern of disease in their town’s children. The triumph belongs to the inquisitiveness and determination of clinical and laboratory investigators in medicine. The efforts of unfettered investigators, who had time to plan careful epidemiological and etiological studies, and a spirit of collaboration among scientists of many disciplines have led to the discovery of the probable cause and cure of Lyme disease.” (pp. 774-775)

It is understandable and expected that the academic community would celebrate the identification of a lyme pathogen that was infecting humans. What was not expected was deciding that cause and cure had been revealed, particularly in a way that conveyed that any future presence of lyme disease must manifest a-problematically. Attitudes like these helped to prevent or constrain any potential further knowledges and understandings about lyme disease and illness (Aronowitz, 1991). As such, Harris (1983) stole exactly what belonged to patients: what “may have been known to the patients for some time” (Murray, 1996, p. 239).

Unsurprisingly, in the years following the 1982 discovery of the lyme pathogen, “what may have been known” has been steadily absented and problematic to the expressed-but-narrow categories, classifications, knowledges, understandings, and reality of lyme disease. Science writer Pamela Weintraub (2013), whose husband and two sons suffered from lyme disease, called these patients “dispossessed” (p. 122) because they chose not to listen to their doctors’ empty diagnoses solely based on “some bizarre mass hysteria” (p. 122). As a result, patients lost trust in medical professionals’ ability to help them. This distrust stems not only from personal experiences, but also from the global handling of lyme disease, which included: an attempt to re-classify lyme disease altogether; misleading the public to take a lyme vaccine that gave people the disease; providers failing or refusing to treat patients who do not live in “endemic areas”; and an attitude in the medical and public health communities that says lyme is easy to diagnose, treat, and recover from.

In this context, when the lyme body does make an appearance, it always reveals itself inside a problematic body.

As of last month, what “may have been known to the patients for some time” (Murray, 1996, p. 239) is being challenged by Burgdorfer himself – from the grave. In this breaking news that I highly suggest you read, it appears that the researcher was hesitant about his “discovery” of B. burgdorferi being the lyme pathogen. We know that prior to this discovery, Burgdorfer had identified a Swiss Agent that appeared to be infecting humans. But in light of a second test method challenging this conclusion and him finding the B. burgdorferi spirochete, the tides shifted and everyone seemed to forget about this Swiss Agent.

Except that Burgdorfer continued to wonder. We know he wrote to a colleague about it and we also know that he drafted a paper about his initial findings. Then, not too long before he died, in 2014 he asked an archivist to collect the boxes of research collecting dust in his garage. There, the archivist found a simple note attached to the Swiss Agent notes. It was definitely written by Burgdorfer and read: “I wondered why somebody didn’t do something.“

Though we may never know exactly what Burgdorfer meant, to me this is a coup for the lyme body. Burgdorfer’s hesitations on the “absolute discovery” of B. burgdorferi being the lyme pathogen should call into question everything we know about the disease. What is more, the researcher’s questions to the bacteria named after him should make us reconsider the process that led up to that fateful moment in 1982.

It is revelations like these that represent exactly why I earned a doctorate in Leadership Studies. As a leadership scholar, I emphasize dialogue, reflection, and distributed power. I define leadership as being inside a body among bodies being influenced by bodies. I reject leadership as a practice of solving problems based on knowledge and evidentiary production – which is limiting in nature – and instead address the source of problems through the process of knowing, which unleashes an expanse of potentialities. All together bodies engage in purposeful work while inspiring each other to complete tasks in pursuit of that purpose. We must encourage, support, and especially listen to people to achieve their purposeful work and unleash their potential.

In that vein, I call upon the lyme-literate community to encourage and support our research community to do good, purposeful work because there is never a time like now to reach out, inform, collaborate, and dialogue with each other. A door has opened and it is time that we walk through it with confidence, (cruel) hope, and power that generates more power, more love, and more healing.

References

Aronowitz, R. A. (1991). Lyme disease: The social construction of a new disease and its social consequences. The Milbank Quarterly, 69(1), 79-112.

Burgdorfer, W., Barbour, A. G., Hayes, S. F., Benach, J. L., Grunwaldt, E., & Davis, J. P. (1982). Lyme disease: A tick-born spirochetosis? Science, 216(4552), 1317-1319.

Chowdri, H. M., Gugliotta, J. L., Berardi, V. P., Goethert, H. K., Molloy, P. J., Sterling, S. L., & Telford III, S. R. (2013). Borrelia miyamotoi infection presenting as human granulocytic anaplasmosis. Annals of Internal Medicine, 159, 21-27.

Clark, K. L., Leydet, B., & Hartman, S. (2013). Lyme Borreliosis in human patients in Florida and Georgia, USA. International Journal of Medical Sciences, 10(7), 915-931. doi:10.7150/ijms.6273

Clark, K. L., Leydet, B. F., & Threlkeld, C. (2014). Geographical and genospecies distribution of Borrelia burgdorferi sensu lato DNA detected in humans in the USA. Journal of Medical Microbiology, 63, 674-684. doi:10.1099/jmm.0.073122-0

Girard, Y. A., Fedorova, N., & Lane, R. S. (2011). Genetic diversity of Borrelia burgdorferi and detection of B. bissettii-like DNA in serum of north-coastal California residents. Journal of Clinical Microbiology, 49(3), 945-954. doi:10.1128/JCM.01689-10

Harris, E. D. (1983). Editorial: Lyme disease – Success for academia and the community. New England Journal of Medicine, 308, 773-775.

Horowitz, R. I. (2013). Why can’t I get better? Solving the mystery of Lyme & chronic disease. New York: St. Martin’s Press.

Hyun, S. (n.d.). Lyme disease. Retrieved December 1, 2014, from http://www.austincc.edu/microbio/2704p/rp.htm

Lantos, P. M., Charini, W. A., Medoff, G., Moro, M. H., Mushatt, D. M., Parsonnet, J., . . . Baker, C. J. (2010). Response of the Infectious Diseases Society of America Lyme disease review panel to Johnson and Stricker. Clinical Infectious Diseases, 51(9), 1110-1111. doi:10.1086/656692

Murray, P. (1996). The widening circle: A Lyme disease pioneer tells her story. New York: St. Martin’s Press.

Pritt, B. S., Mead, P. S., Hoang Johnson, D. K., Neitzel, D. F., Respicio-Kingry, L. B., Davis, J. P., . . . Petersen, J. M. (2016). Identification of a novel pathogenic Borrelia species causing Lyme borreliosis with unusually high spirochaetaemia: A descriptive study. Lancet Infectious Diseases, 1-9. doi:10.1016/S1473-3099(15)00464-8

Steere, A. C., Malawista, S. E., Syndman, D. R., Shope, R. E., Andiman, W. A., Ross, M. A., & Steele, F. M. (1977). Lyme Arthritis: An epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. Arthritis and Rheumatism, 20(1), 7-17.

Vayssier-Taussat, M., Moutailler, S., Féménia, F., Raymond, P., Croce, O., La Scola, B., . . . Raoult, D. (2016). Identification of novel zoonotic activity of Bartonella spp., France. Emerging Infectious Diseases, 22(3), 457-462. doi: 10.3201/eid2203.150269

Anna's dissertation was approved on April 15, 2016, and the entire dissertation is published in ProQuest, an academic database. Believing that knowledge should be shared, my entire dissertation may be found below for free. You will see that I have included both the full study, as well as individual chapters. In addition, I have included mini summaries of each chapter to help readers understand what they will find in them.

Full Dissertation

Link here

Chapter 01: Introduction

This chapter suggests the problem that this entire dissertation is seeking to address, which is that despite the many assertions about what is (or is not) lyme disease, the reality is that we do not know what lyme disease is. In so doing, I present a thorough and succinct review of the nature and issues of lyme disease. In all, this chapter begins my purpose of this grounded theory study, which is to explore how the embodiment of lyme shapes knowing the disease.

Link here

Chapter 02: Literature Review / Conceptual Framework

I lay out a conceptual framework that first critiques the classic scheme of knowledge production and, in its place, suggests that the process of knowing happens in being. Given that the point of this study is to turn the lyme body into a legitimate contributor to lyme knowing, I first address classical forms of knowing, particularly in light of pre-industrialization practices of medicine. I follow that up with a post-classical, corporeal realist account of knowing that reflects advances in quantum theory and body studies. Not forgetting the purpose of this study, I argue that the lyme body is an agential being that contributes to knowing the disease. In particular, a phenomenological framework has the ability to get into the experience of the lyme body. Since the lyme body is a primary actor in the pursuit of lyme knowing, I end this chapter by suggesting that the lyme body expounds upon our understanding of leadership studies altogether. In the midst of its own limits, perceptions, attitudes, emotions, and experiences, the lyme body can nevertheless bridge the limitations of all bodies through its specific material engagement with the world. If nothing else, the lyme body teaches us that the leadership act is for all bodies.

Link here

Chapter 03 & 04: Methodology

Chapter 3: I build a methodological framework based on abductive thinking, where both observers and the observed produce knowledge and construct meaning of the lyme body. Applying abduction to grounded theory that has critical ethnomedicine influences, this chapter forms assumptions about how to generate a theory of the lyme body. I specifically use critical discourse analysis to explore the limits of voice, which means to question how the lyme body/voice does or does not get heard.

Chapter 4: In this chapter, I discuss the protocols and procedures as actually performed in the study. In so doing, I briefly introduce each of the five participants and note which interviews and observations occurred and when. Notably, I discuss a “listening methodology” that I coined as a solution to the overwhelming amount of audio I had to transcribe. Using Gemma Corradi Fiumara’s dual approach to both logos and legein, I make the case that her argument is highly compatible with abductive thinking and a post-classical, corporeal realist account of knowing. I end this chapter with my analysis and coding procedure and the main, dominant themes gleaned from this data.

Link here

Chapters 05-09

Chapters 5-9 are allocated according to the six research sub-questions. In Chapter 5, I first begin with a long-form telling of the five participants’ stories concerning their journey with lyme disease. In so doing, this chapter addresses research question No. 6 and the lyme demographics. Following this chapter is Chapter 6, which addresses research questions Nos. 1 and 2. Here, I am interested in the sufferers’ daily experiences, as well as actions they take to improve their health and well-being. In Chapters 7-9, the data becomes less story-centered and more issue-centered. As such, I address research questions Nos. 4, 3, and 5, respectively, by analyzing the way the lyme body is situated within and without traditional Western medicine, the way the lyme body makes meaning of its experience, and how the lyme body performs in personal, organizational, and global spheres of influence. Chapters 5-9 are best read in order because I wrote them with a clear narrative arc. At the very least, I suggest first reading Chapter 5 before skipping around. 

Chapter 05: Stories & Demographics

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Chapter 06: The Lyme Body's Day-to-Day Experiences & Actions to Improve Health and Wellness

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Chapter 07: The Lyme Body is Situated Within and Without Traditional Western Medicine

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Chapter 08: The Lyme Body as Meaning-Maker

One of the suggestions I make in this chapter is a phenomenon called "cruel hope." Cruel hope could be defined as desire performed through an enduring, affective gesture only, regardless of the quality of the subject’s attachment to the object. I suggest, then, that the definition of cruel hope more comprehensively constitutes hope and the hoping act. As such, the aspects of cruel hope include: (a) motivation, also known as the desire of an object; (b) affect, or that which transpires between subject and object; and (c) the act or gesture that one makes to the object of desire.

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Chapter 09: The Lyme Body's Performance in Personal, Organizational, & Global Spheres of Influence

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Chapter 10: Findings & Conclusions

This study concludes with a discussion on three dominant themes to emerge from the data: time, sacrificial bonds, and what I call the “philosophy of the weird.” This is followed by a discussion on the implications for, and the limitations to, this study, as well as the potential for future research and applications. Put simply, I come to the conclusion that we must first engage in a movement of thinking about lyme disease before we can know the disease.

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Appendix A: Glossary of Terms

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Appendix B: Arguments for a Lowercase Spelling of Lyme

tl;dr Let’s stop capitalizing “lyme.”

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Appendix C: Literature Choices

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Appendix D: My Own Story: Suffering, Recovering, and Living with Lyme

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Appendix E: Symptoms Across All Stages of Lyme Disease

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Appendix F: Co-Researcher Covenant

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Appendix G: Primer on Participant Journal Entries

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Appendix H: Request to Participate Form

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Appendix I: Coding Stripes

The data that informed the sacrificial bonds (see Chapter 10).

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Appendix J: Interview Guides

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Appendix K: IRB Application

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References

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Notes

Though dissertations usually have just five chapters (plus references and appendices), due to the huge amount of data I collected, it was clear that Chapter 4 needed to be expanded into six different chapters (Chaps. 4-9).

My doctoral department uses the APA 6 style with a few exceptions. One noticeable exception is that we include page numbers in nearly all citations.

Readers may notice that all margins are 1" with the exception of the left margin, which is 1.25". That margin was necessary for binding purposes, and since the print version is considered to be the final product, I felt it was best not to change the margin back to 1" in order to keep the page numbers the same.

Dissertation Chair Dr. Chris Francovich, [email protected]

Anyway, enough about my love life and back to the ILADS conference. The third and final reason I have been hesitant to talk about my experience at the conference is because I don't have a lot of positive things to say about it. Before I get to my challenge, however, I want to touch on the good that came out of this conference.

The best part about this ILADS conference or any of their conferences for that matter is that it brings like-minded colleagues together to expose them to new or enhanced areas of knowledge and understanding. In particular, these conferences bring together a mix of old and young health providers and some researchers who would count themselves either as lyme-literate or lyme-curious. They are interested in learning more about how to provide better care to their lyme patients. If they are researchers only, they are interested in building the body of lyme knowledge globally.

Another aspect about this specific conference was that its location in Europe gave me special access to knowledge that I, as an American, may not always see. In fact, I heard about past or ongoing research activities occurring in countries like Finland, Ireland, Belgium, Turkey, and Norway. It is vital to presume lyme studies to be a global activity, so conferences like these are successful at bringing diverse perspectives together.

Recently, I came across a thoughtful article about the shift from god-centered thinking to humanist-centered thinking to now Big Data-thinking. This philosophical shift is happening everywhere, especially in medicine. According to Historian Yuval Noah Harari, "The most important medical decisions in your life are increasingly based not on your feelings of illness or wellness, or even on the informed predictions of your doctor — but on the calculations of computers who know you better than you know yourself." Patients and providers are expected to rely more on tests, algorithms, and projections rather than on their own intuition, knowledge, and understanding.

I disagree with Harari's suggestion that humanist-centered thinking is all about what one feels, mostly because his tone is condescending and dismissive of the body, agency, and subjectivity. As I wrote in my dissertation, previous-philosophical-thought-that-is-still-around carried a dual approach that together I refer to as "classic knowledge." The first prong to classic knowledge was scientific knowledge. This is where everything could be accounted for and measured so that the world would no longer remain mysterious or chaotic. Science was the expression of an ordered consciousness and was seen as what Montgomery (2006) called a “what-you-see-is-what-there-is representation of the physical world” (p. 6). In medicine, professionals simplified complex realities and ideas to make it easier and faster to diagnose and treat patients. In pursuit of these diagnoses, professionals would “submerge” (p. 71) their accumulated knowledge of complex biological, psychological, sociological, and physiological realities in order for presented evidence to surface. Patient history, symptoms, and test results were the only variables they could or wanted to consider in order to make a clear and convincing diagnosis and treatment plan. As such, these professionals placed a cap on the limits of their collective consciousness in order to create order and increase their power over the patient’s situation.

On the other hand, moral knowledge, which is the second prong to classic knowledge, was tested based on potential, future consequences. Being immanent and divine, moral knowledge was concerned with that which constituted human life, including needs, desires, bodily sensations, perception, and memory. Accordingly, bodies were presumed to be blank slates and people were considered to be highly impressionable vessels, both of which suggested that knowledge production would occur outside of the human, too. Here, humans did have an “inner sense” (as opposed to an “outer sense”) that allowed the mind to have the power to recognize “experience." Still, truth was still considered to emerge through the outer sense, which is where empirical methods like measurement, dissent, and perception lay. In this way, subjectivity and the inner sense was assumed not to be as rigorous as the outer sense.

In all, classic knowledge was based on the question, How is knowledge possible? To answer this question, conditions have to be predetermined and independent of context. In this way, whatever something “is” could not be challenged because its properties existed independently of human action. Furthermore, observers looked for signs, which stand in for something else. Hence, signs are always found outside and away from the object. So if the "truth" of health is independent of one's experience, agency, context, and subjectivity, then it is quite natural for Big Data to emerge as the primary form of thinking in health care or otherwise.

Of course, my conceptual framework spends a great deal of time arguing for a corporeal realist account of the lyme body – not to mention the chronically ill body – that seeks an understanding of the human's embodied experience in a particular context or situation. If the lyme body is an agential being that is always knowing-in-becoming, then lyme knowledge is neither inside nor outside, but always intra-acting with one another to be what it becomes. In this framework, the question shifts from How is knowledge possible? to What is knowledge? While the former focused on evidentiary production ("my evidence is better than your evidence"), the latter is about human values across time, space, and matter.

So what does this have to do with the ILADS conference? Although ILADS is doing so much good for the lyme community, the absence of patient experience and subjectivity is straight up negligence. I heard many speakers speak about "signs" in relation to test results, but never mention patient narratives and experiences. All of the research but mine were extremely focused on the natural sciences, but I never heard why any of the research mattered to the end users, the patients. To my knowledge, few, if any, older ILADS members viewed my poster presentation, and most of the inquiries I received were from new-to-lyme attendees. I received a lot of positive feedback – or at least of a lot of "hmm's" – but mostly I stood there wondering if ILADS would ever be interested.

Finally, many of the findings at the ILADS conference were presented as "objective," all the while oblivious to the fact that they are extremely subjective. For instance, one speaker presented the results of his "objective" study by saying X percentage of patients were found to be "more calm" and "less fatigue." What "more calm" or "less fatigued" objectively meant was never addressed.

I admit that I'm biased against this study because it won one of two awards for best study, a category to which I had submitted my study. Despite both being unfinished, two studies won $1,000 cash prizes and the opportunity to speak in front of the entire audience. However, my study – one that, after six grueling months of intimately getting to know lyme sufferers and their families, offered insightful and provocative findings about them, practitioners, and their experiences of lyme disease – was given the consolation prize of a poster presentation plus a $500 travel stipend. I really appreciate the stipend, I do. I don't care about the larger cash award anyway. However, I have to question a conference that thinks in the classic knowledge scheme. While they may produce some results contrary to, say, the IDSA and the CDC, I doubt they are producing anything that jolts the traditional thinkers out of their philosophical slumber.

The irony is that there were plenty of traditionalists at the ILADS conference. In fact, there were clear signs of disrespect against the younger, newer, or more modern folks who probably bring helpful knowledge and perspectives to ILADS' mission. The emcee, who looked, spoke, and behaved like the spitting image of Mr. Feeny from "Boy Meets World," scolded the audience more than once to put away their phones (people were taking photos of slides), look forward, and only ask questions written on a notecard. The awkwardness was palpable until he mysteriously disappeared for the last several hours of the conference and a younger emcee took his place. Whether it was intentional or not, when she immediately took questions by hand, the room burst into natural conversation among attendees. Ahh, it felt we were finally getting somewhere as a group. Still, from a structural standpoint, the fact that ILADS only accepts M.D.s as voting members means that it excludes Naturopaths, patients, and other disciplines from having a say. (Greedily, they will allow N.D.s to be non-voting members.) As one of the premier voices of the lyme movement, it is concerning that few voices are invited to the table of an organization with such large influence.

The point is this: When health care (lyme-literate organizations and all) acknowledge that experience, agency, subjectivity, and context matter – in addition to the necessary studies on Big Data, natural science, and so forth – we enhance, improve, and challenge our current ways of thinking about illness, chronicity, the body, and what it means to be human. When we include the situated, different body, it helps knowledge, understanding, and thinking flourish in ways previously – literally – unthinkable. In this way, I imagine a world in which lyme sufferers are genuinely included in lyme knowledge activities as primary contributors to the thinking about their own disease.

In this case, the patient was hoping to find a doctor in a traditional system that takes medical insurance. In fact, access to health care is one of the most common barriers to sufferers finding adequate treatment. The realization that the American medical system (not to mention most of the world's health care) absents the lyme body is one of the most difficult truths to digest. So in response, I wrote the following:

I believe and have experienced that nothing is more important than your health. In fact, your health is an investment because without it, you have nothing. The longer you go without treatment, the harder and longer it takes to get well – and the more costly. In that vein, I highly encourage you to pursue the right doctor despite the financial cost. You are saving money by spending money now. That said, find the right doctor whom you trust. If you do not trust your doctor, you will be forever be fighting him/her every step of the way. Ultimately, the only person who really loses in that kind of agreement is you! So find the right doctor and let go of the cost. You deserve this kind of investment in yourself. Take it from me, the investment will come back tenfold.

The reader may notice that I did not propose a solution to "fight the system." Experience and rigorous study says the system will win every time – at least in the short-term when the patient cannot spare one more minute. Instead, I suggest patients 

Choose health.

Choose you.

Choose life.

Choose humility.

Choose love.

Choose happiness.

I (Anna) have a tattoo on my left forearm that says, "I am enough." I got it last October just hours after my very last interview in my dissertation study. This permanent message was my gift to myself after spending six grueling months traveling to collect a yuge amount of data for the study. As one can imagine, the message comes from deep places, the main one being that I have increasingly decided that I must come first – that is, my being, my body, my time. The one thing about chronic illness in general is that for some reason, our bodies stop being our own. If timespacematter is a reality we live in, depending on the situation, time seems to slow down or speed up; the communities in which we live and have always known become recognizable no longer; and our agency over our bodies is outright stolen. Living, therefore, begins to look like one big farce.  

Until the lyme body becomes "woke" to the fact that all that matters is happiness. In fact, in addition to something I call "cruel hope" and the ever-presence of death, lyme sufferers make meaning of their illness by embodying happiness. Happiness doesn't come all at once, however. Rather, it comes through moments or glimmers of happiness. For instance, glimmers of happiness come during moments of relief from the body pain. Strider, who was one of my research subjects, once described his experience of happiness:

Pain has been greatly diminished in the last couple of days too, mostly just at the level of discomfort. For two days now the only pain medicine I’ve taken has been at bedtime. What a relief! In addition, I’m having feelings of happiness at times, and relative ease. I went fishing for the morning yesterday with a friend and, despite a little balance wobbliness and degeneration of my casting precision after a few hours, it went well and I didn’t push. I keep telling myself, “Just do what you can, Strider. Don’t sweat it.”

When the pain diminishes, it is like a weather front that pushes the clouds away to let the sun come out and shine. All of a sudden, life is less about slogging through life and more about presence, contentment, and happiness. In addition, life becomes less about lamenting lost careers, relationships, and money and more about taking steps to gain happiness and perspective. All the expenses, compromises, lifestyle changes, and adjustments suddenly become tolerable when the lyme body alters its goals. Indeed, though a full recovery may never cease to be a “cruel hope,” being happy is always and infinitely available, too. As Lizzie wrote,

I’m in a really good place right now and am happy with my life. Of course I’m still sick and I have bad days, but right now I’m content. I’ve learned what I need in my life to make me happy and that’s a really good feeling.

As it turns out, Lizzie found infinite happiness when she changed her priorities. She realized that what she needed most is to enjoy her friends and family and make each other happy. In this framework, illness nearly becomes a secondary or tertiary concern. For instance, the fact that Lizzie’s boyfriend was willing to accept a partner with limited physical abilities and higher financial burden indicates illness is just one aspect of many that make a person. Illness does not necessarily have to comprise all of the qualities of a person.

Jae’s friends and family expressed a similar sentiment. Not only did they desire Jae’s happiness, they also confirmed that she was obviously much more content now that she was on her way to receiving an education in Eastern medicine. Up until then, Jae had been in a “slump,” her friend said. Not only was this slump the result of her illness, but also because she was not being challenged at work. Where Jae’s symptoms once dominated conversations between the two friends, now that was hardly a subject they talk about it, Jae’s friend said. “This is the best I’ve seen her in years,” she said. Jae’s partner also affirmed that getting an education in Eastern medicine is ultimately making Jae’s life better and helping her start “an internal voyage” that is “doing positive things for her.”

In conclusion, the lyme illness does not have to remain a morose experience. In fact, happiness seems to emerge when the lyme body finally begins to experience momentary respite from body pain, in conjunction with having available resources to rise above the pain and find some clarity. These resources might emerge from hobbies, such as Strider’s fly-fishing, or a support network of friends and family, as in Lizzie’s case. These resources may also come from the pursuit of a goal or a dream. For Jae, her happiness increased upon finding a vocation that both challenged and nourished her mind, body, and soul. In any case, the embodiment of happiness seems to teach the lyme body new ways of being-in-the-world. Happiness also seems to be one of the strongest signs that the lyme body is making progress to heal and grow.

Thus far, I have discussed the qualitative researcher as artist, where researchers pursue the world as they see it. I then discussed the researcher as translator/interpreter, where researchers convey the world as they experience it. The third role of the qualitative researcher is as transformer, where the published narrative invites readers to reflect on the worlds they are reading about and then to "acquire new insights and perspectives on some aspect of human interaction" (Glesne, 2006, p. 175). The researcher as transformer is successful when readers discover increased self-understanding. According to Shweder (1986, as cited in Glesne, 2006),

Good ethnography is an intellectual exorcism in which, forced to take the perspective of the other, we are wrenched out of our self. We transcend ourselves, and for a brief moment we wonder who we are, whether we are animals, barbarians or angels, whether all things are really the same under the sun, whether it would be better if the other were us, or better if we were the other. (p. 175)

One reason why I pursued academic study in Leadership Studies, as opposed to sociology or the health sciences, is because I strongly feel that my work must affect others. Indeed, I am extremely interested in exploring the "What do we do now?" question. Also, Leadership Studies requires that I know a lot about a lot, which is necessary because lyme disease is an excellent microcosm of some larger social, cultural, global, environmental, political and medical issues currently at play. The lessons and insights we learn from lyme can increase our self-discovery in other areas.

Reading between the lines, I suspect that Glesne (2006) presumes researchers to have an audience – and not just the audience of the few people who tend to read journal articles. If researcher as artist, translator/interpreter, and transformer are to engage any of these roles, they need a platform in order to influence others. In that vein, I do not buy the old adage that researchers are doomed to publish items that will be hardly read. Considering the fact that many research studies are funded by someone or something else, at the very least, researchers have an audience in whomever is funding them, especially if these are taxpayers. It is therefore the researcher's responsibility to bring the research to the masses. Furthermore, in this day and age where anyone can start a blog, Instagram account, academia.edu, or YouTube channel, researchers have little excuse not to make their research public. Already, there are some creative ways academics are doing this. For instance, Florence Chiew (2014) uploaded a YouTube video of her sharing a synopsis of her journal article that included a long discussion of Karen Barad's agential realism and quantum physics. Though the article may be too difficult to understand to the average person (although I think Barad is my hero and everyone should read her), the hope is that the video will be more accessible.

For these reasons, I make my research as public as possible, within the limits of confidentiality agreements, of course. I believe it is vital that my supporters participate in as much of the research as possible, too, even if that is seeing photos from my travels.* Also, contrary to what people may think about it, research can be a lot of fun and inspiring, so I want to convey that. Research is for everybody; anyone can do it. In that vein, some day I want to open up a research institute that is expressly by and for the lay lyme population, namely patients. Each research project would be initiated based on what the patients are asking for and what we read in the community. Also, each project would be conducted in a team format that would include knowledgeable people from diverse fields, as well as at least one patient.

In this way, it does not seem like research was ever intended to be a passive pursuit. If the researcher as artist is to invite others into the world as she sees it, and the researcher as translator/interpreter is to illustrate that world as she experiences it, then the researcher as transformer is to evoke a response from others. The researcher effectively says, "Hello, please come in. Let me show you my world. What say you?" At this point, the reader now has the floor.

References

Chiew, F. (2014). Posthuman ethics with Cary Wolfe and Karen Barad: Animal compassion as trans-species entanglement. Theory, Culture, & Society, 31(4), 51-69. doi:10.1177/0263276413508449

Glesne, C. (2006). Becoming qualitative researchers: An introduction (3rd ed.). Boston, MA: Pearson.

Shweder, R. (1986, September 21). Storytelling among the anthropologists. The New York Times. Retrieved from http://www.nytimes.com/1986/09/21/books/storytelling-among-the-anthropologists.html

Originally published September 4, 2015.

One of the main roles of any researcher is to convey someone else's world (Glesne, 2006, p. 174). In particular, qualitative researchers are largely successful if they help the reader understand the actions, purposes, feelings, and thoughts of a person or group of people. As translators, researchers help readers see differently by communicating various nuances of meaning (pp. 174, 175). Researchers, however, are neither objective middlewomen nor merely reporters of the news. Indeed, qualitative researchers are not journalists with a few extra letters behind their names.

For readers to see differently, qualitative researchers must introduce a new way of seeing. Qualitative researchers must model different seeing by becoming interpreters themselves (Glesne 2006, p. 175). As interpreters, researchers "draw on their own experiences, knowledge, theoretical dispositions, and collected data to present their understanding of the other's world" (p. 175). With a backpack full of these tools, qualitative researchers use inference and conjecture to draw relationships between one object or concept to another (p. 175). Essentially, Glesne was giving permission for researchers to be human as they conduct research, analyze the data, and evaluate the findings. As I said last week, one of the main tasks for qualitative researchers is to help readers enter the world as they understand it to be.

Because Glesne offered no understanding about how researchers would draw on their own experiences and knowledges, it unfortunately did exactly what most methodologies make absent: the body. By presuming that researchers automatically embody their experiences and knowledges, these methodologies make the implicit expectation that researchers are including their bodies in the research. However, as I will show, we have set up research to be an activity in the mind and not in the body whatsoever.

Actually, it would be more precise to say that the mind gained primacy because the body became unduly absented from discourse. Indeed, the body was the antithesis to modernist philosophy. Feelings were replaced with reason and the body was replaced by the mind (Turner, 1995, p. 28). Consciousness, which is explicit awareness, became elevated over sensory and bodily functions. Since they were physically located in specific specialties, disciplines, and laboratories, experts naturally followed suit by fragmenting the body and allocating it out (Foucault, 1977, p. 12; Wilson, 2004, p. 13). Furthermore, with the rise of experts, there followed a decline in traditional religious authorities to define and regulate bodies (Foucault, 1977, p. 12; Shilling, 2012, p. 3). Science somewhat substituted for religion, but overall, individuals were largely left to determine meaning and values on their own (Shilling, 2012, pp. 3-4). The result of this “privatization of meaning” (p. 3) was that people discovered new and other ways of living, being, appearing, and believing (p. 4). “[T]he body [was] no longer a ‘natural given,’ but more a phenomenon of options and choices,” Shilling (2012) said (p. 5). Individuals were left with the task of trying to re-create experience. In sum, where modernity was about order, the body was about disorder. Where modernity expressly categorized the world, the body lacked a natural “fit.” Where modernity held consciousness to a few people with “legitimate” power and ideas, each body expressed its consciousness in its own unique way. Consequently, the body grew further and further distant from modernist discourse to the point where it became absent altogether.

Until the 1980s, not including the pragmatists, classical sociology primarily did not include the body in its discourse (Shilling, 2012, pp. 32-33). In classical sociology, mind and body were assumed to be separate. In fact, the mind, not the body, was seen to constitute human beings only. Likewise, language and consciousness were attributed to the mind and not to the body (p. 12). While some have argued that sociology took a disembodied approach, Shilling suggested that the discipline used a dual approach toward the body in that the body was an absent presence (p. 12). At the most, Shilling said, was that classical sociology viewed the body as a theoretical space, and not a space occupied by a human being (p. 14).

That which was absent in classical sociology was the recognition that humans not only occupy bodies, but also that bodies permit and constrain language, consciousness, emotion, action, relationships, perception, and so on (Shilling, 2012, pp. 12-13). In other words, classical sociology failed to recognize that the presence and capacity of bodies make all living possible. Hence, the experience of living is inevitably mediated through the body, as well as within the interaction between bodies. The uncertainty that one experiences going into these interactions, as well as the uncertainty created from these interactions, creates the basis for current sociological discourse (p. 24). It is worth noting that social systems also play a role in embodiment. While bodies interact with one another, they also live within and between social systems (p. 24). Thus, people always live within a particular context. People will act, think, and talk differently depending on the situation.

In that vein, as a researcher currently in Month No. 5 of a sixth-month study following five lyme disease patients, one of the most conscious intentions I make is to embody the entire act of research. That includes memo-ing how I am feeling emotionally and physically, listening to my own internal responses while in the field, and becoming an active participant in the lives of each of the participants. Indeed, observations are so vital to developing research that yields deep, rich meaning. Observation is not just gazing upon another person or object and writing that down. (For example, the weather is warm today.) Rather, researchers who fully listen are fully engaging their bodies in relation to the observed person or object. (For example, I feel the heat of the sun, which is at its peak in the sky, on my skin and that makes me feel good and even sweat a little. I put on a hat to keep me cool. I notice seven people wearing shorts and tank tops, while I only see one person wear long pants and short sleeves. Everyone is wearing open-toed sandals, and four people are wearing sunglasses. I notice all are drinking cold drinks...and so on. You get the picture.) When observations are taken as passive seeing, it is too easy to pre-judge the event and thereby miss details that may have some relevance later. Conversely, when observations are embodied, every detail is considered to have equal value. Later on, the embodied researcher will discover that some of the most mundane details may become the most queer, while some of the most queer details become the most mundane.

Interviews are based on self-limiting language that often prevent me and the participants from fully communicating an experience. As the researcher, therefore, the best solution to this dilemma is to place my body into their experience. In this research study, observations entail anywhere from traditionally observing a participant perform an activity to me performing the activity with them. It all depends on the situation. Some of the observations are not something I can physically do. For example, I am not able or willing to take the medication the participants take. In these instances, I ask questions throughout the experience, but also just merely listen, watch, and take notes. On the other hand, many of the activities I observe are easily accessible to almost anyone. Though I may or may not have any experience with these activities, I join them anyway so that I experience what they experience and feel what they feel. If they consider the activity to benefit their lives, then I think it is worth trying to figure out why and how by trying it myself.

What is more, all observations present the opportunity for both of us to relax and talk in a way that is not as easy in a formal interview. In fact, I often hear details about their lives that I would not otherwise hear. Some of this has to do with the activity itself. For instance, when I accompany the participants to their doctors, the appointment will yield new information to which the participants will respond. The privilege of observing their responses in real time is invaluable. This is also why I travel with them from their homes to and from their doctor's office. It matters that I experience hours-long road trips or flights. Qualitative research that is embodied has no shortcuts.

Another kind of observation that I do – but have not disclosed to the participants – is that I try to engage "offline" in some of the activities the participants mention they do. For instance, one of my participants decided to buy an adult coloring book to ease some their stress. I subsequently bought a coloring book and markers to try the activity myself. When I color, I think about what I am feeling and perhaps what the participant could be feeling, too. Actually conducting these offline observations helps me embody the activities in a way that is hopefully similar to the participants.

In conclusion, research is an activity that is primarily experienced in the body, not in the mind. The only way that I can convey the world as I see it is to convey the world as I experience it. In order to experience the world then, I must encounter the people in the world. The embodied encounter may not be pretty and certainly is not predictable; nevertheless, that is where the truest form of communication lies.

References Foucault, M. (1977). The political function of the intellectual (C. Gordon, Trans.). Radical Philosophy, 17(13), 12-14.

Glesne, C. (2006). Becoming qualitative researchers: An introduction (3rd ed.). Boston, MA: Pearson.

Shilling, C. (2012). The body & social theory (3rd ed.). Thousand Oaks, CA: Sage.

Turner, B. S. (1995). Medical power and social knowledge (2nd ed.). London: Sage.

Wilson, E. A. (2004). Psychosomatic: Feminism and the neurological body. Durham, NC: Duke University Press.

According to Glesne (2006), qualitative researchers live in a large gray area between the concrete, technical world and the imaginative, created world. "As artists," Glesne said, "[qualitative researchers] seek imaginative connections among events and people, imaginative renderings of these connections, and imaginative interpretations of what they have rendered" (p. 174). Qualitative researchers are not merely creating a world that suits them, but are actually helping readers enter the world as they understand it to be.

I have been struggling with the identity of being an artist for a long time. Although I've had no problem calling myself a writer, being an "artist" seems to place me on a whole other level alongside other artists in mediums other than academia: dance, fine art, sculpture, photography, and so forth. I can safely say that I have no strong interest in communicating my own work in any other way than the written word and largely in academia. I fully support artists in other mediums, and though we might speak the same language, it often feels like we are all speaking in different dialects. At least that's the way I have experienced it.

I have also considered artists to be little oddballs. You know the ones: those wearing colorful, mismatched clothing, maybe sporting more than a few tattoos, totally scatter-brained, probably a barista or a yoga teacher to pay the bills, and always seeking out their next art show. I depict this artist with love, mostly because I have yet to resolve the artist in me – oh, you know, the one who is a little weird, wears whatever she wants (usually some version of yoga pants) and doesn't even "do" her hair, has a large tattoo on her right arm, is becoming a tad scatter-brained, will probably take an academic position to pay the bills, and is beginning to take steps to share her work.

I have been a writer since I was a little girl. It first started by my teaching myself to read at the age of four. Seeing my older siblings reading, I decided that I would do that, too. Reading soon turned into writing; in fact, I have a few mementos of the "books" I wrote as early as the first grade. From the time I was a girl and then all the way through college, several teachers and adults regularly encouraged me to write.

One of the books I wrote when I was about nine-years-old is, with a little editing, primed to be published into a series of children's books. The stories are crazy good because they are crazy dark. I chuckle at how similar I am to fourth-grade Anna. I've had to shelve this project to complete the dissertation, but my mentor happened to blithely comment that she'd like to see me write children's stories someday.

"Haven't I already shared the stories I wrote?" I asked.

"What stories?"

"Oh, I haven't told you about them?"

"See," she smirked.

It told me that I'm headed in the right direction and need to keep going, and I emailed her the stories right away.

Reading is my way of figuring out the world; writing is the way I communicate back to it. I fell head over heels with a past lover by reading my stories to him (in turn, he read me poetry in his native language...*swoon*); used to post my writing all over my walls (and kind of became infamous in Spokane for them); have performed my writing (even crying on demand); and seen my stories foreshadow major events in my life. What is more, water and snow are two major themes in my writing. It is no accident that I almost drowned in a river earlier this summer and that I found the experience to be, in part, quite transcendent. "Frost" was no accident either.

Though my perspective is not the whole one, I think the way I see the world needs to be told and understood for the sake of justice. This motivates me to keep writing and speaking my voice, even if to an empty audience. What also motivates me is the feeling like I'm home when I'm writing. The last couple months have been more fieldwork than reading and writing, which I think up-ended my sense of creativity and imagination. Emotionally speaking, I was getting antsy and a little unregulated. Indeed, I notice that when I'm in the field, I tend to lose myself in order to step into another person's world. Now that I've gotten some time at home to burrow down and connect to the research through writing, I feel like I'm able to stay exactly me while also being able to step into the imaginative space once again.

References

Glesne, C. (2006). Becoming qualitative researchers: An introduction (3rd ed.). Boston, MA: Pearson.

Originally published August 17, 2015.