But It’s Heavy: Friendships, Expectations, and Illness

In this post, Xan reflects on the weight of chronic illness, and role of emotions, expectations, and caregiving in the experience of chronic illness and emotion management.  

In my last post I wrote about the fallacy of people thinking I cannot carry things because like many people with cystic fibrosis (CF), I am very thin. “But it’s heavy!” strangers will say. “You can’t possibly carry it all by yourself.” If only they knew. I manage just fine with heavy material objects, provided they aren’t especially large or unwieldy. No, the heaviest burdens I carry are those unseen to others.

Knowing the data, knowing people with your condition have an average life expectancy in the high 30s range, constantly explaining “well it’s really a bimodal distribution differentiated by access to care and a bunch of contextual factors” to wide-eyed people whose eyes well up with tears because it’s too hard for *them* to handle to know you are sick. Now *that’s* heavy. I spend so much time explaining things that people could Google, so much time bending over my phone responding to messages asking if I’m okay when what people really want is for me to make *them* feel okay. My neck has begun to hurt from the weight of my head literally dragging me down.

So now I’m holding my phone at 90 degrees to my face, stretching my neck and thoracic muscles, asking myself tough questions about why I’ve always swallowed whole the assumption that it’s my responsibility to do the emotional labor of coddling people in my life under the guise of helping them get educated. It’s never the people closest to me who ask for this. They know better, or they wouldn’t have gotten so close to me in the first place. Asking how I am is kind and affirming. Using that question to spend the next 30 minutes gobbling up all the emotional support you can from me about how hard my diagnosis is for you and how much it scares you…is not. It literally weighs me down.

Being open about your fears is a tremendously good thing in and of itself. It’s where you seek support in coping with those fears that matters. This isn’t black and white; it’s a question of nuances. Ring Theory offers a good way to understand socially affirming flows of emotional support, using a simple algorithm of “comfort in, dump out”. The basic idea here works like an earthquake. The person dealing directly with the challenges at hand (terminal illness, loss of a loved one, sexual assault, etc.) dwells at the epicenter. Then shock waves radiate around the epicenter with progressively lower intensity as distance increases. A life partner feels them most intensely, followed closely by other family members who are close to the person. Then come very close friends, then other friends and colleagues in a much bigger ring, and then casual acquaintances.

I’m a pretty textbook long-surviving CF patient in many ways, including both all the issues I do experience and what has heretofore been more minimal involvement of the pancreas. Whether I have any pancreatic involvement remains unknown, because I definitely have some bizarre endocrine symptoms these days. I just keep coming back to the fact that I had low-positive results on a sweat test *and* so many of the core clinical signs of the disease and nobody gave a damn. Why was my case dismissed when my parents kept fighting so hard to get me medical care? Why did I have to be treated in fragmented little pieces by specialists focused on this or that organ? Why did I have to undergo surgery to rebuild mucous membranes that could have been reasonably well protected by drugs that were already on the market? These questions pull me down like heavy stones.

I see a CF specialist tomorrow for the first time in my entire 33 years of life and these questions spin through my mind constantly. And I feel the lingering fear that this doctor won’t believe me either, that I’ll now be caught in a terrible limbo of knowing I need a specific type of care yet being just as unable to get it as when I had more questions than answers. Maybe I still have more questions than answers. I spend most of my time trying to answer other people’s questions, though. And it has exhausted me so thoroughly that I feel empty inside, as if my disease consists more of the need to justify it and reassure others than of its terrible physical mechanics, which I wind up with little cognitive space to consider. I go to bed each night feeling as if the day has drained all the life from me, questions racing through my mind in the darkness that surrounds.

I don’t have any real answers. I wish desperately that I did, but I don’t, and I often feel as if I’ve failed the people in my life because of that. All I have is a lot of lost time and an opportunity to do things differently with a doctor who stands a chance of understanding my case and my needs. So…to be continued. I’m excited about meeting with the specialist. I try to Be Positive in all things. But there’s so much beneath the surface, and it feels exceptionally heavy today. So I strive to grow more proficient and comfortable in asking others to shoulder a piece of that burden, not my grocery bags or guitar equipment. For it’s the invisible weights that bring us down the hardest.

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Bringing in the Political Self: Teaching in the Era of Trump

Katie L. Acosta, Ph.D., is an Assistant Professor of Sociology at Georgia State University where she teaches courses on race & ethnicity, sexuality, gender and the family. In this post, Dr. Acosta reflects on teaching and academic freedom under the Trump Administration. 

I recently attended a meeting designed to explain the boundaries of academic freedom to faculty members and to brainstorm best practices for creating a non-hostile classroom environment that presents students with a balanced picture of contemporary political happenings. “Try not to make statements that directly disparage a political candidate,” we were instructed. “Consider focusing on policy issues rather than personal characteristics. Consider avoiding clothing or paraphernalia in the classroom that directly support a particular political candidate. You don’t want to wear anything that might appear antagonistic to students who may not share your point of view…”

This is where we are in higher education under a Trump administration.  I’m supposed to teach my students about their social world, about Racism, Gender, Sexuality and the Family – while remaining neutral on the hostile and deeply-offensive statements that our president has made during his campaign and since he was elected.  But herein lies the problem, my political ideologies are shaped by my sociological lens and my sociological lens is shaped by my personal experience. These three things do not, nor have they ever, existed in separate spheres for me. Arguably this is what makes me a good professor, or at least it is what fuels my passion for what I do.

Sitting in this meeting hearing the suggestions being made brought me back a few years to the morning after Trayvon Martin was killed. That morning, I was scheduled to be in my Introduction to Sociology undergraduate classroom teaching about racial bias. I remember my heart racing as I scoured through social media learning the details of this awful tragedy. I desperately wanted to cry, but instead I pulled myself together and walked downstairs to teach. I had decided I would avoid the topic entirely. I was certainly not in any position to have a “balanced” conversation about it with my students. Avoiding the topic was the only way that I knew how to keep myself from feeling my pain.  Inevitably, however, ten minutes into the lecture a student raised their hand and wanted to discuss the events. Most of the class still did not know who Trayvon Martin was. And as this student explained the events that transpired, I remember looking at their mostly blank, white faces, first with perplexity and then with anger.

I began to feel myself shaking behind the podium. How could so many students have such blank stares hearing about this boy’s death? My rage regarding this incident is deeply personal. As a mother of a black teenage boy, I imagined my son walking at night with a bag of skittles. But, my rage was also fueled by my sociological understanding of this incident as part of a larger systemic problem in our society – of this country’s fear of Black men and boys and of this country’s failure, time and again, to give them the benefit of the doubt during these encounters.

Channeling my sociological lens and harnessing my personally-driven passion helps me bring intellectual material to life for my students. It allows me to make their learning about more than just words on a page, key terms, or lecture notes. It allows me to make their learning about something real, tangible, and consequential. How do we get our students to understand the consequences of political happenings without letting them see why we are invested in these issues? I would never want a student to feel alienated in my classroom, but I have no interest in perpetuating an idea of myself as a disembodied worker whose personal life and work life don’t intersect. I can’t think of a single Sociologist that I respect who maintains these artificially separated worlds.

Keeping our political selves out of the classroom also presumes that our bodies do not advertise this self.  I am an Afro-Latina queer cis woman. Don’t these identities speak for me even if I don’t? How many of my students believe they know my political leanings before I ever open my mouth? And if my students do make assumptions about my politics, then why not make my political ideologies clear in the interest of transparency?

I spent the first few weeks of this semester stumblingly awkwardly over how to teach my courses without being too political. But I don’t believe it’s done me or my students a bit of good. Instead, it’s flattened my delivery and robbed me of the passion that used to come with every lecture I delivered. So now, I’m going to take a different approach. Our democratic system as it currently stands is the most illustrative example I could possibly come up with for the prevalence of racism in the United States.

Rather than ignoring political happenings, I can draw connections between sociological theories about racism and our contemporary reality. Only in a country that refuses to take an honest and direct look at the deep-seated racism that plagues it, can we have fertile ground for the Trump phenomenon to flourish. And only in a democracy that is largely run by white men who refuse to acknowledge their privilege do we see such willingness to overlook the racist, Islamaphobic, sexist, homophobic, biphobic, and transphobic actions and policies of Trump’s cabinet picks.

While this is something that I do not have control over, I do have the opportunity to ensure that the next generation doesn’t so thoroughly miss the boat when it comes to understanding the covert and overt ways that racism exists and persists in our country.  I will continue to encourage my students to engage in respectful dialogue with me and one another on the many issues we currently face not with a forced or feigned sense of neutrality but with the promise of respect, integrity and in the spirit of understanding.  For creating this environment in my classroom, I apologize to no one.

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On the Dubiously Accessible Caste System of Conspicuous Fitness

In this post, Xan reflects on relationships between consumption and fitness while placing these cultural patterns within the context and perspective of people managing chronic conditions.

Recently the New York Times published an article about outcomes from wearable fitness devices. The takeaway from this article was that “Fitbits and Apple Watches and the like may have their uses, but they don’t appear to be effective in weight loss.” No surprises there. I’ve always looked at these devices as part of a culture of “conspicuous fitness”, in which folks manage their image more than their health.

I do like that these devices often encourage people to view activity as a continuous spectrum rather than a dichotomy of active vs. inactive pursuits. But most folks who wanted a life with physical activity integrated into the process of doing other things, like getting to work or shopping for groceries, were probably already doing that stuff. Plus, expensive devices really don’t target demographics of folks whose activity may be more limited by environmental factors like street safety and air quality.

The whole “conspicuous fitness” thing also seems alien to me because of the aggressive norming of how we perceive people as “fit” or not. I’m never going to be running marathons–which the literature suggests is probably not that great for you anyway, but I digress–or climbing mountains. But I have good strength and work to maintain it. I like to walk, either alone with some music or sharing time with my spouse. I like to dance at concerts and at goth clubs when I go.

And then there are the can’ts. I can’t run or ride a bike for long distances because the cystic fibrosis (CF) has attacked my joints, so anything causing impact or intense repetitive stress is decidedly off the table. I can’t swim in pools because I get pseudomonas infections easily and the chlorine plays havoc with my skin. I can’t go hiking in places where there’s no restroom access–peeing in the woods is well and good, but other things not so much. I can’t go waterskiing or do other stuff where I can’t use a bathroom at a moment’s notice.

I don’t mesh with the picture of “fitness” in many people’s minds, yet the work I do to keep my body strong–and how I integrate it into the bigger picture of my life–makes a big difference in my ability to live well with such a pervasive disease. People often think I’m frail. I wrote a publication about it. People don’t think I can kick some ass if I need to. My first paying job was teaching karate classes for junior students. People chronically underestimate me. They try to keep me from carrying my own groceries, from moving heavy things. The element of surprise never seems to lose its power.

I define “fitness” as part and parcel of my own continuous process of illness management, in which I adjust daily to nuances in the challenges of living with CF and its consequences. My disease and how it limits me seem as normal to me as the ways in which CF does *not* limit me. Walking down the street, legs in rapid swing, feels about as normal as it gets. But this activity gets read differently if I wear the sheath dresses and blazers I favor for work, or my weekend jeans and band T-shirts, versus spandex leggings and trainers.

I’m never that person cruising the produce aisle with workout gear and an mp3 player strapped to my arm. I have no interest in being that person. Trying to convince the world that my body conforms to preconceived notions of “fitness” would be an utter lie. I may be relatively strong, but I’m not *vital*. Article after article flying through my social media feed chirps that “fit” people don’t feel tired all the time. What goes unsaid is that many of these journalists never bother talking to people living with chronic diseases that impact our mobility, our activity choices, our energy.

Which is a shame, because you’ve got to be pretty damn fit in a number of ways to function at a high level with diseases that constantly attack your body from the inside out. Doubly so if you want to keep your independence, something many of us cling to like a life preserver, as if it is the only thing holding our mortality in check. Sometimes carrying our own groceries or wrangling heavy equipment feels like all we have. So all of this got me thinking about perceptions and reality, and about the nature of heaviness when you carry a ponderous burden everywhere you go. And that is a topic for a separate post.

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