Tag: Disability

I’m a Liability, but I’m Worth the Risk

April 27th, 2021

Introduction

Theory meets reality in this post about two frameworks, or schemas, about illness and systems of belief. I get a little technical, but you may learn something along the way! I discuss sick role theory, standpoint theory, and what it means for a person living with serious illness. The take home message is that those on the margins of society, those with life-limiting illnesses, disabilities, and other social determinants offer a wisdom that often goes unrecognized.

A Sanctioned Deviance

Sickness is a form of social deviance. A “sanctioned deviance,” to be more specific. That was sociologist Talcott Parsons’s view in his “sick role theory” that he advanced in the 1950s. The sick person, according to Parsons, is subject to both rights and obligations. The rights that protect the sick person include a base assertion that a sick person is not responsible for having their illness and a general dismissal from performing expected societal roles and functions – the deviant aspect of the sick role. And yet, the sick person is bound by obligations that include the obligation to seek treatment, to get well, and to return to performing expected social functions -the sanctioned qualifier.

From Normal to Alternative Overnight

In the early months of my illness, I embraced sick role theory. This theory resonated with important characteristics of my identity: After moving from Arizona to Indiana, a coming home for our family, I felt out of place. (I was born in Indiana, but at four or so years old, we moved across the country for Dad to pursue an ambitious and noteworthy appointment in his career.)

My social context shifted significantly. My childhood in Arizona was shaped by late 80s, early 90s West Coast trends. Skater culture was big, and the typical clothing style, activities, and attitudes of my peer group in Arizona reflected California, owing to geographical proximity and regional climate. I represented this West Coast cultural setting, not by any deliberate or overt decision on my part, only as an extension of where we lived. Like basketball is endemic to Indiana, kids in Arizona naturally grew up skateboarding or rollerblading.

What was a fairly normal cultural context in Arizona was counter-cultural in Indiana. A “skater kid” in Indiana carried a lot more cultural baggage than in Arizona. I went from “normal” to “alternative” overnight, with a cross-country move. I harbor no regrets or resentment against mom and dad for their decision to move. I enjoyed a loving relationship with both sets of grandparents before their death in Indiana that wouldn’t have developed had we stayed in Arizona. Yet the labels, deviant, punk, skater, alternative, counter culture, were to some extent foisted on me because West Coast culture just hadn’t made its way to the Midwest when we moved. Our family’s relocation out-paced the trends. I remember when Pacific Sunwear, later “PacSun,” opened in the Greenwood Park Mall, and it was mostly just the same shit that was in any random department store in Arizona. Because I didn’t fit in accidentally, by high school, I didn’t fit in on purpose.

Why do I share this?

I’m recently 39 years old, and I’ve felt like a deviant for most of my life. Reading the sick role work from Parsons met me where I was, feeling so out of place. Out of place culturally, and with the diagnosis of glioblastoma, a rare disease with only one or two cases per 100,000 people, and an average age of diagnosis 20 or 30 years older than me, I was again out of place in the “disease space.” No doubt that we’re out here, and I’ve met many of us, but there are not many young-30s parents to young kids who get this disease.

A Liability

I gave a few community talks, telling my story, beginning in March 2017, not quite a year after diagnosis, and these events honed my skills and opened doors to giving bigger and bigger talks.

Adam rehearsing a community talk in 2017

I experienced one of the most significant professional accomplishments to date when I delivered my End Well talk in San Francisco in 2019. I recall a candid conversation with End Well Project founder, Dr. Shoshana Ungerleider, in 2018, after I applied to be an End Well speaker. The selection process begins more than a year before the End Well symposium, and together Dr. Ungerleider and I made a shared plan to periodically update her on my health status in case I wouldn’t be well enough to travel and give this talk. (Whitney traveled with me; otherwise, traveling and speaking would not have been possible. Thank you, Whitney, for everything, always.)

Adam giving his End Well talk in December 2019

After receiving the diagnosis, I worked hard to reconcile myself to accepting a grim prognosis, and Whtiney and I worked hard to help our kids understand, but that conversation with Dr. Ungerleider was one of my first experiences comprehending the professional implications of living with a life-limiting diagnosis.

I was the sanctioned deviant.

Over the past couple years, this theme recurs over and over. It’s a risk to book me for future speaking events. It’s a risk to accept me for nonprofit appointments. It’s a risk to place me in a job role that demands increased responsibilities and the performance of required hours and tasks each week. (I write this, having recently accepted a new job role, knowing, even, that some of the folks involved in that decision may be reading now!)

I discovered in the past few months that I am a risk to potential publishers of my work because without a completed manuscript in hand and the usual author expectations to promote a book through readings, events, and writing promotional articles, I am an uncertain investment in an already difficult market. This places me in the odd circumstance that the thing that makes my work so important is the same thing that makes it less attractive.

Shared Cognitive Dissonance

A tragic irony of this advanced cancer diagnosis is that most the people I meet, both friends and random encounters with folks, say something to the effect of, I could get hit by a bus tomorrow! This is such a stupid thing to say, but I know it is well intentioned. The point, I guess, is to find some relatability in the illness, so as to feign some common ground of understanding. I get that. Life is fragile and precious, sure, and I see you, supporting me with the language and conceptual framework that you have onboard. I’m good. You’re good. I only ask that we keep in mind that most people don’t wake up each day wondering if today is the day that they’ll be struck down by a wayward bus, while I do wake up each day wondering if today is the day that I’ll have a catastrophic seizure, brain bleed, or some other event. Shit, I had a pretty bad seizure only a few days ago that Whitney described with raw honesty.

At any rate, that culturally we have this notion of unexpected death as a way to interpret serious illness, while we also shy away from taking risks on people who actually are going to die sooner than they should, is a shared cognitive dissonance. If your random risk of death is in a similar category to those with life-limiting illnesses than why subject the sick person to the greater risk/reward calculus? Now, in practical terms, I understand the difference here, but in the abstract, we find that that risk is a matter of degree, and mortality is universal.

Whitney and I live our lives out loud. We post regularly about living with brain cancer. This is no surprise. How many pictures have you posted about your pets, your kids, your dinner? Same here, documenting our lives, it is just that the normal for us is the daily struggle of a devastating illness, and while it is a feel good to get the likes on MRI scan days, life is exceedingly difficult in between, and within the past few months, Whitney and I have found it important to be transparent with not only the good but also the impossibly hard.

Adam and Whitney in Washington D.C. for National Brain Tumor Society’s Advocacy Event, Head to the Hill, 2017

But doing that, we’re taking our risk, to trust our friends and acquaintances to stay engaged; not turn away.

Worth the Risk

Truth is that I may not be able to maintain the new job role and schedule. That isn’t a declaration, it is only the relevant context. What does it mean for me, for my employer, if this new role turns out to be unsustainable? Might I be worth the risk?

There is a philosophical theory called Standpoint Theory that was first articulated and advanced within feminist philospohy. Standpoint theory takes a person’s perspective and social station as integral to understanding systems of belief and knowledge. The theory holds that marginalized folks are privy to understanding systems, power dynamics, and relationships in ways that those with power do not. This isn’t, or doesn’t need to be, controversial. I suspect that I have a better perspective on the Social Security Disability Income program than even the program designers and policymakers because I’ve had to navigate the program for our family’s livelihood, not as an abstract policy discussion at the Social Security Administration or in Budget Committee meetings. I know the policy up and down, this way and that, because I live it every day. That is the power of starting thought on the margins to inform the center.

What I have come to understand – and reject! – about sick role theory is that its interpretation of illness, its value judgment about illness, say, why illness is bad, according to sick role theory is this dismissal from societal functions. It is ultimately the loss of social and economic productivity that is the badness of illness, according to Parsons. The sick deviant is just that, a deviant, who may be excused from work, but that excusal must be policed because sick role theory takes economic productivity as a normative good, that is, a good that we should aspire to.

I am a liability to my employer. I am a liability to my nonprofit programming commitments. I am a liability to our family when I am at home with the kids and Whitney is at work. I am a deviant. I do not participate with the same productivity that I did pre-diagnosis and in ways that are commensurate with my peer group. As of just recently (last month), I depended on social welfare programs to support our family, and so not only do I not contribute with rigorous productivity, I am also an expense.

Am I worth the risk?

When we replace sick role theory with standpoint theory, we find that insight and wisdom come from the margins, and in a world designed by those who historically have held power, what you may characterize as taking a risk on me, and others systemically pushed to the margins, is the wisest investment that you can make.

I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you.
@adamhayden

What are the liabilities in your life? What liability do you present? I’m here to tell you that you are not a liability at all; instead, your marginalized status gives you perspective that those in the center would never achieve without you. This is why we must dismantle the systems that undermine and oppress, and instead, work to amplify the voices that power has sought to silence, but that, friends, is another blog post entirely.
I’m not Dead, and That’s Weird

January 27th, 2021

“How are we going to live four more years like this?” Whitney asked me around our fourth “cranniversary” (the anniversary of my craniotomy, the surgical procedure to remove my brain tumor).

I shrugged. How will we?

My surgery occurred on May 26, 2016, and my official date of diagnosis was a couple weeks later, on June 10. Now that the calendar year has turned over, we see my five-year mark approaching on the horizon. (Expect another, likely more reflective post then!) By the population statistics, less than 10% of glioblastoma patients live to see this milestone. My radiation oncologist who congratulated me on becoming a long-term survivor at my 18 month follow-up would no doubt be surprised to see not only that I’m still kicking, but that I maintain part-time work and a pretty robust writing and speaking schedule. But Whitney was right: How do we live another four or five years like this?

Adam poses with his fourth “cranniversary” cake on May 26, 2020. Cake by Moist Cake Co.

The Brain Tumor Social Media (#BTSM; @BTSMChat) organizing team met for our quarterly meeting this past weekend. We gather every few months to brainstorm topics for the following monthly Twitter chats. Each meeting begins with an informal check-in, “the feels.” Our team has grown over the years, and these days our members include four brain tumor patients, a former caregiver to a late spouse, and a neuro-oncologist. Together, the seven of us represent pretty diverse perspectives, yet we traverse shoulder-to-shoulder across the same common ground, rocky and turbulent as that ground is. Many of us lead support groups, are involved in patient care, mentor and assist newly diagnosed patients and their loved ones, and deliver talks and lectures. We are each other’s support in many important ways, and our meetings, plus our group text thread, serve as the vehicles to say the honest things that we may not say publicly.

I’m not dead, and that’s weird, but I can’t say that publicly, without also putting in a lot of effort to unpack those words so that they don’t alienate others.
Adam during the #BTSM quarterly meeting in January 2021

Brain tumors and cancer are devastating. This maybe goes without saying, but often things that are so obvious are assumed to have shared meaning, and so we don’t tug those stubborn details into the light to discuss them.

All cancer is bad, and there is no such thing as a “good” brain tumor, we often say in the brain tumor community. There are layers of nuanced meaning packed into the brain tumor experience. Some people are given a prognosis of 10, 15, even 20 years; others hear that they may only expect a year and a half. Prognosis is a statistical analysis based on tumor size, placement in the brain, molecular, or genomic, characteristics, and a host of other confounding factors. When it comes to outcomes, the ranges of survival are every bit as confusing, if not more so. Now, with only months until my fifth anniversary, I’ve sadly watched many friends die from their brain tumors, and yet here I am, blogging away, co-moderating Tweet Chats, wrestling with our kids, and masking up to grab a couple beers with friends when able.

The truth is, brain tumors are more than just aggressive cancers, they present an existential threat. Seizures and headaches, fatigue, my sensorimotor impairment that requires the use of a cane anytime that I’m out for more than just a few paces here and there, from the front door to the mailbox or the parking lot to a building entrance. I am beginning to notice more short-term memory loss, and I’ve grown more irritable and impatient, either that’s me or the meds. Others face many more significant impairments than I’ve listed here: language processing issues, cognitive decline, near complete memory loss, and confusion.

The worse the symptoms are for others, the more distress creeps in, I think, “What’s in store for me?” And when friends die, “How long have I got?” These are probably the obvious difficulties of living with serious illness. The more insidious stuff is the bewilderment of life. I’m not dead! And that is weird! But it’s also a secret that I keep to myself.

Newly diagnosed patients and their loved ones have come to trust my voice, and others like mine, and the last thing we are looking for on the start of a journey is someone telegraphing from miles ahead, reporting that the path is treacherous. For our closest loved ones, the caregivers, they know our truths, and we know theirs, though they do not always align.

How will we live four more years like this?

But as those concentric circles expand, those other loved ones who are involved with our care but not the daily grind, and further in the ripples of our impact, extended family and social media followers, maintaining a positive outlook, giving hope and inspiration, calling for and expecting thoughts and prayers, these are the roles we play and anything less is threatening to the narrative that society has constructed around illness.

The rally cry is to fight, to battle, to be a warrior. “Do not go silently into that good night!”

We learned nearly five years ago that I could expect a year and a half. A doctor who oversaw the course of my radiation congratulated me on long-term survival at my third six-month follow-up: 18 months (we meet much more frequently with my oncologist). “I hope to see you again in another six months!” I exclaimed at the conclusion of that visit. “All we can do is hope,” he replied.

This isn’t a narrow miss or a near-death experience. This is one long, protracted journey toward the completion of my life, and rather than create safe spaces to interrogate the reality of our mortality, build out an infrastructure of care that places physicians, social workers, chaplains, and patients together to discuss end of life goals as a standard approach to care, or legislate social services solutions to free patients and loved ones from onerous disability paperwork and guarantee financial security from the onset of serious illness to the completion of life, no instead of that, we place the preparation of advanced care planning, disability application, and financial planning squarely on the shoulders of patients and their caregivers and loved ones.

Patients are told not to throw in the towel, don’t lose hope, hold out for the miracle, but when we frame cancer survivorship by a relentless battle, we award the wrong priorities. Instead, we should celebrate reconciling the plans that we had for our lives with the reality that we may need to adjust our goals. We need to turn our attention toward grieving the life that is not. Maybe the miracle is not the life saving treatment breakthrough, but instead, it is the breakthrough of fresh perspective that asks honestly, “How would I like the completion of my life to look?” And not, “What I can possibly do to extend it?”

In the first couple of years after diagnosis the goal is survival. Recover from surgery, tolerate chemotherapy, arrange transportation for daily radiation therapy, and accept a life-limiting illness. But if we survive the first several months or a year of acute treatment, we learn that all the protocols are only to do that: facilitate survival.

Survival isn’t living; survival is not dying. Life is agency, being responsible for one’s own outcome, life is security and safety, life is space to explore living with illness, quality of life is answering the question posed by psychiatrist Jonathan Adler, “What does life mean to the person who’s living it?”

I’m not dead, and that’s weird, so by my own definition, I’m surviving, but I’m in the pursuit of answering that question about life’s quality.

How do we live another four or five years like this? The truth is, I have no idea. You never put much thought into the first three or four years because you’ve been told that you’d be lucky to get that many. But having reached this provisional place of surprising survival, I suspect the answer lies somewhere in systems changes so that we can get in place better structures to support patients with terminal diagnoses. Beyond that, I think it’s important that we normalize these questions and begin to reward authentic confrontation with mortality.

I’d rather leave a legacy of wisdom than war.
Health as Resistance

September 27th, 2019

We had been brought up to notice, to take “life as it is” and turn it on the spindle of compassionate action to make it more like “life as it should be.” This is resistance (Shem, 2002, p. 934).

When short term goals of care were achieved, I was discharged by my inpatient physical therapist, with a referral to continue therapy in an outpatient setting. During a month-long hospital stay, I graduated from a wheelchair to a walker; in fact, my first mode of transportation following brain surgery was a wheelchair equipped with a plastic tray to hold my weak left arm to prevent my hand from falling limp onto the spinning spokes of the wheels while clinicians transported me from my room to the cafeteria or the therapy gym.

Slowly but steadily I practiced shuffle steps between the parallel bars in the gym, using my hands for balance and added support. Then with a bulky knee brace to prevent my leg from hyperextending, risking damage to my knee, I scooted along with a walker. Finally, I was discharged with a cane to build up my mobility over time but instructed to use a walker around the house and use my wheelchair outside of the home.

Adam and his inpatient physical therapist practice walking, June 2016

Assistive devices are often associated with a decline in function and independence, but for me, walking only with the use of a cane was an achievement. Now, I cast my cane aside when playing outdoors with our boys, but summed up recently by Whitney when I jogged several paces, “well that was awkward.” Not to mention the last time I attempted to walk our energetic two year old, 55lb dog, he brought me to the ground. “Are you OK?!” A nearby neighbor shouted. “Yes, I usually have a cane…” I began, but I let the words fizzle out after realizing the explanation for a fit-looking mid-30s year old taken down by a happy dog required more than just “I usually have a cane.” I waved off the concerned neighbor and struggled to my feet.

See, there is life “as it is” and life “as it should be,” observes Samuel Shem, the pseudonym for doctor and author Stephen Bergman, whose 1978 cult classic House of God, describing the brutality of medical residency, continues to be a must-read for medical students. The book, following a class of young doctors beginning their art and practice of medicine, exposes the reader to the horrors of the healthcare system, but Bergman does so with dark humor. In a 2002 article, “Fiction as Resistance,” from which the epigraph for this post is taken, Bergman shares more about his commitment to fiction as a guide to understanding.

As it is, or as it was in the summer of 2016, I celebrated when I was able to transfer to the toilet without assistance, and how it should be, the recovery of my agency and independence to use the toilet on my own, and also, bathe, dress, and tie my shoes became my act of resistance to the locked brain trauma unit that was my home during this time of partial recovery. The content of my journals during this time serves as the foundation of this blog, but more than share my stories with others, my writing is (was) also my guide to understanding. Fact can be stranger than fiction, and Shem (Bergman) and I have at least one thing in common: our tools for examining the world are pen and paper.

“Other than my brain cancer,” I joke, “I’m in pretty good shape.”

As it is, I confront my health every day. Will I have a terrible headache? Do I have the familiar seizure onset symptoms, or “aura”? Does my left foot tremor when I set it down to take a step, signaling that fatigue will be problem? Does my head float, seemingly detached from my body?

I wrote a blog post recently addressing the “you might as well” sentiment: you have brain cancer, have some ice cream, you might as well. In that post I resisted the idea that serious illness affords an anything goes attitude. Paradoxically, perhaps, I suggest that the opposite is true: serious illness demands more rigor and discipline.

I rewrite my to-do list weekly, and I am happy to report, that list continues to fill with conferences, speaking, invited guest blog posts, and advocacy events. There is so much I have yet to accomplish: the book that is sitting incomplete on my laptop’s desktop, the three draft academic philosophy papers that need a little more attention before they are ready for submission, and the reformatting of my CV to seek more opportunities to tell my story.

My boys deserve the most able bodied dad they can get before his body falters and fails. Whitney deserves the maintenance of my health for as long as I can sustain before her spouse and care partner roles continue to bleed together.

What if the most punk rock thing I can do is get a good night’s sleep? What if rebellion in the face of illness is to decrease or eliminate those extra glasses of wine? What if my greatest act of resistance to terrible disease is prioritizing health?

Health, as resistance.

What if that’s how I take life as it is and make it more life as it should be? What compassionate actions might you take? What gap between “is” and “should be” will you close? What is your greatest act of resistance?

Shem, S. (2002). Fiction as resistance. Annals of Internal Medicine, 137(11), 934-937.
The sick role

August 22nd, 2019

Last week Whitney and I launched a GoFundMe campaign, and we published our needs to the community with this blog post. We reached our goal within hours of the post, and in the following days, we doubled our goal. We are incredibly thankful for the amazing community that continues to support us, now in our third year facing brain cancer. We received generous contributions from all areas of our lives! The Facebook community of friends and family shared our campaign almost 60 times! On Twitter, the home of my academic networking, many of our followers retweeted the blog post and contributed. On LinkedIn, despite it being the social platform where I am least engaged, we managed to drum up support after a friend and healthcare professional shared the blog post, calling it a “must read.” For the generosity and social awareness, thank you does not adequately express the months, if not years, of easier breathing our family will experience after your selfless giving. Thank you.

I am most humbled by the fellow patients, care partners, and widowed members of our community who left comments and shared posts explaining that our family’s financial struggles, though painful and contextualized to our circumstance, are nevertheless common to nearly everyone facing serious illness and advanced cancer. When I manage to capture in writing the experience shared by so many others, I am reminded of my strengths and the privilege I have to raise my voice. The call was to help us financially, and we thank you for that, yet what I carry with me are the thanks offered by others for explaining financial toxicity in an accessible way.

In the 1950s a sociologist named Talcott Parsons described a concept he called the “sick role.” According to Parsons, people who are ill have both rights and responsibilities. The rights are to protect the dismissal from normal functions in society, while the responsibilities of the ill are to partner with healthcare professionals in an effort to get well.

Illness is a social deviance, according to Parsons. Deviant because the seriously ill are no longer meeting the expectations of their assigned social roles. And so while not responsible for their illness–not blameworthy for illness–the seriously ill operate under an umbrella of sanctioned deviance. Deviance that is policed.

I was discharged from the hospital after deemed medically stable after brain surgery. I was transferred to an inpatient acute rehab facility, where I started in a wheelchair. I was discharged from the inpatient facility able to walk with the use of assistive devices. While inpatient, my bed and wheelchair were outfitted with alarms that would alert staff if I tried to get up or transfer on my own. I rang the call button if I had to use the toilet. For weeks I had someone standing with me in the bathroom. Policed deviance.

These days, I work part-time, but I report my earnings every month to two different agencies. I undergo medical review annually. We submitted a “doctor’s note” to lobby the school transportation office to allow a bus stop in front of our home so I would not need to navigate potential weather conditions to walk the several houses to the assigned bus stop. I am offered the occasional honorarium (a one time payment) for speaking in conference settings, but rather than thank the organizers and take pride in my work, I complete paperwork to account for my earnings.

This is policed deviance. This is the sick role, some sixty years after Parsons introduced the concept.

Our algorithms saturate social media feeds with targeted advertisements, but our health and insurance systems are unable (or unwilling) to take readily available data, such as the nationally standardized diagnosis codes (ICD-10) to drive decision-making logic that, for example, excludes people with terminal illness from medical review.

I answered a call from my long term disability provider just this week with the question prompt, “What more support do you need from us to get you back to full-time hours?”

Curing my brain cancer would be a good start.

I conclude this post with where I began: Thank you for the generous outpouring of support you showed our family these past two weeks. We are profoundly impacted by your generosity, and all of us are enjoying a better, more peaceful home life as a result of your giving. We stand a chance now of actually getting back on our own two feet–or two feet and a cane, whatever. Our kids continue their activities. Whitney may be able to step away from the several “pick up days” she takes at work. Thank you, thank you.

Still, there is the nagging reality that our deviance is sanctioned, our freedom is policed, and so beyond the existential threat of serious illness, there is the threat of regulatory authority that could take away our protections at any time. That threat may only be met through civil, honest dialogue, and a commitment toward protecting the rights of others. But rather than view people with illness as deviants who must be policed in their dismissal of social roles, how might we lift up the experiences of the seriously ill to teach us all something about humanity? About how to live each day? About insurance and healthcare and what “work” is rewarded. How might we elevate serious illness rather than police it?

We have more work to do.
Unraveled

February 24th, 2019

“I think this is the winter everything unraveled.”

I sent this text to my spouse, early Sunday morning, February 2019, calculating battery time remaining on our family iPad, as the kids huddled on our bed, while the neighborhood lie dormant with a power outage. Thick February skies quieted our home, and a drizzle of late winter rain needled dry, fallen leaves as they leapt from brown grass, animated by gusts of wind.

I took my usual position, leaning against the kitchen counter, near the coffee maker (currently, useless), and I scrolled my Twitter timeline. Social media is one of a few avenues for my peer engagement. My driving restrictions limit my time outside the home, and so, my adult interactions. My spouse and I desire, naively, for ourselves, parts of the lives each other leads. She prefers to stay home with house chores and our kids. I prefer to be in the world of work and errands, engaging peers and colleagues.

Or so each of us thinks, anyway.

The grass-is-greener phenomenon describes our envy. I suspect many working parents or guardians, with an at-home partner, relate to these emotions. We sell short the feelings of our partners when we project our idealized circumstances onto the other, “if I were in your shoes…” This tendency to imagine the best case scenario and fault our partners for either complaining about, or failing to recognize, the privileged position in which they hold, may be explained by a failure to listen closely. The daily texts, abbreviated and curt phone calls, the end of day exasperation, sighs heavy with frustration, and hyperbolic complaints (“I just can’t do this anymore”) indicate that we feel our voices are not recognized; that we do not feel heard. Quieted.

Empathy is something like the ability to take on the mental states of another person, but too easily do we slip into ourselves, experiencing what the other faces, rather than stretching our imagination to consider how might we feel if we were the other person, replete with their body, feelings, emotions, circumstances, and standpoint, facing those same circumstances. Sympathy describes the former; empathy, the latter. Sympathy is the identification of challenges facing another, and we consider what if we were “in your shoes,” as I mentioned. Empathy requires deeper consideration. We may ask, “what if I were this gender, with this age, with those lived experiences, with these responsibilities, facing this situation. That is empathy. We won’t get it right. Sympathy is cheap, and empathy requires practice. Cheap and easy often trumps deeply considered and practiced.

Sympathy is extended in virtue of a power dynamic, where the person expressing sympathy assumes they understand what the other person is experiencing and takes license to dole out advice. Empathy reveals vulnerability because it undermines our power. A truly empathetic expression–if one is achievable; see: consideration and practice–reveals that we have limited means to truly imagine our way into the experience of another. We are restricted and biased by our own experiences. We cannot separate completely our unique perspective and position from the perspective of whom we are attempting to relate to empathetically. And so our power, our confident, arrogant, envied, “if I were you,” power must be set to one side. We must admit we are powerless to adopt another’s perspective. We are mistaken to think our “if I were you” advice is either helpful or relevant. At best, we practice empathy.

Practicing empathy requires a commitment to listening closely. Like reading the words of a compelling novel, we must give ourselves over to the narrative. We cannot hear the story through our eyes. We must stretch ourselves to becoming that character featuring in the narrative, while admitting our ignorance and powerlessness to achieve this aim. The attention paid to our favorite novels guides the attention we are to pay to our loved ones. Though, in the real life interaction, our imagined character has a voice, speaks back to us, co-creates a shared space for meaning, where the words and events one person selects to construct and share are risk-laden sacrifices because we offer ourselves with no guarantee the stories we tell are interpreted with the intended significance. Our meaning may be lost in the transmission. The author of the novel recognizes this tacitly: the words on the page are open to interpretation. We do not recognize this so easily as speakers in relationship because we rely on the nuance of verbal communication. Still, interpretation features saliently in how we perceive others.

In this way, sacrificing ourselves on the alter of intended meaning is an act of vulnerability. We give away our power to create meaning for ourselves by transmitting our meaning-laden experiences of the world into the shared space of co-creation, between ourselves and another. If I were to generate the confidence to share my feelings, I cannot be certain those feelings are respected with the same reverence for which I hold toward them, in virtue of those being my feelings.

Practicing empathy forces us to pursue an unachievable end, and to admit our powerlessness to embody the experience of another. Even a very close, intimate other. We act vulnerably when we admit we have little license to say confidently, “if I were you.” Sharing our experiences is likewise an act of vulnerability. We are powerless to convey the deep, personal meaning of our experiences. And so, interpersonal communication, by virtue of its very nature and aim, is a resignation of power. Those with whom we communicate most intimately, where the stakes are highest, with our loved ones, is where we stand to lose the most. In this shared space lies the recognition of our failure to empathetically relate; in this shared space lies the failure to guarantee the transmission of how we feel. Admitting failure, or admitting our limitations, at any rate, is giving up power.

We often do not recognize this because rather than practice empathy, we slide into sympathy: “Oh, if I were leaving the house each day to go to work I’d have richer interactions with peers and not feel so burned out at home”; “If I were able to be home each day with the kids and stay up on organizing our house, I’d have much less anxiety.” These sympathetic, power-reinforcing dynamics, that fool us into thinking we understand the circumstances of another, and so have the warrant to offer advice, protect us from pain because they protect our power. But to connect empathetically, to stretch ourselves beyond sympathy and practice empathy, requires we flatten the power dynamic. Empathy acknowledges authentic communication seeks for itself vulnerability and humility.

When power is resigned, we open ourselves to pain. We may feel quieted when our voices are not heard. Our power has not been given freely. Our power has been taken from us. Powerless, we seek ways to take punitive action. We hurt and so we look to regain power through threats, angry statements, and nonverbal signals. Avoiding affection, restraining intimacy, limiting authentic communication, seeking emotional relationship with others are actions the vulnerable take to restore the power balance.

“I think this is the winter everything unraveled.”

I recognize that I feel powerless. I do not pretend to speak for my spouse. I’ve claimed in this post, we cannot achieve a fully empathic connection. Though I have not said a goal should not be pursued only in virtue of its far and uncertain reach, even if beyond our grasp. In other words, connecting empathetically is a goal worthy of our practice. Without claiming too much, I imagine my spouse to feel powerless, too.

Freely giving up our power, it turns out, is a powerful act. It is an expression of trust, an expression that I can share my feelings and experiences and my partner can be trusted to tease out subtle and nuanced meaning. Freely giving up power is an effective response to feeling our power is taken. Quieted. We affirm, others may affect our powerlessness, but vulnerability is an act we may attend to on our own terms.

I am powerless, vulnerable, and from this place, maybe I am prepared to achieve a greater degree of empathy.

Relationships are built on communication, verbal and otherwise, and each act of communicating is open to interpretation. We hold power foolishly when we imagine with hubris that we know what others are going through, but when we freely give our power to another, when we say, I am worried. I am hurt. I am afraid. When we stop thinking, “if I were in your shoes,” and stretch ourselves to imagine the life-world of another, that vulnerable sacrificing of power just might be the way forward.