Disability

Health as Resistance

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.

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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

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

“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.

Living with Cancer: Insidious and Destabilizing

“Don’t think, daddy! You can’t think right! You have a brain boo boo. Just ask me next time.”

Isaac, our confident, insightful seven year old, the oldest of our three boys, said these words to me this morning, when I shoved his lunch box into his backpack while rushing out the door to catch his school bus. The prompt for his cutting remarks was my explanation of the contents I packed for his daily lunch. “I thought you liked that stuff!” I muttered dishearteningly, with a mixture of confusion and exasperation.

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Isaac, seven years old, before school, January 2019

My crime: thinking, or rather, as we may say as adults, assuming, and on that charge, I am surely guilty. I assumed a handful of snacks, protein, a juice box, and a square of chocolate would be a fine lunch for our oldest guy who is limited in his food options, after Whitney and I discovered, with the help a functional medicine practitioner and blood, urine, and saliva testing, that Isaac suffers from several food allergies.

I’ve raised before the issue of talking to kids about cancer, but what we face, the daily grind of parenting three young boys, my spouse who must work outside the home to serve as our primary earner and carry our medical benefits, and the primary at-home guardian, me, suffering from brain cancer and the host of accompanying neurological disorders–namely, headaches, seizures, and motor impairment–is a combination of factors that affects our kids in untold ways. It affects me, too, in a deeply fracturing sense. A fracturing of my will from my ability; my plans for the future and my practical responsibilities.

Surely we all squabble with our kids, and for this reason, motivated by a desire to connect, or to comfort by striking chords of relatability, or for fear of peering too closely at a situation that is all too frighteningly real, friends say to me, “yeah we get lip from our kids, too,” or “we also have a picky eater.” But the burgeoning independence and personality of an oldest child, or picky eating habits or allergies, and even the stressors of an at-home guardian fail to address the insidiousness of serious illness.

“You can’t think right! You have a brain boo boo.”

 

The 17th c. philosopher Thomas Hobbes, in his important work, The Leviathan, envisions conditions for people absent of government oversight: a “state of nature,” he called it. Important to note is that Hobbes is writing in a time when Europe is ravaged by a bloody civil war and political crisis. At any rate, Hobbes considers life to be “solitary, poor, nasty, brutish, and short,” in this state: “a war of all, against all.” Hobbes did not consider this a historically accurate description of pre-political humanity; rather a thought experiment to motivate his political theory.

During my first semester as a philosophy undergraduate we read excerpts from Leviathan. My professor pointed out the “insidiousness” of the imagined “natural state.” The point, my professor emphasized, is not that everyone is locked in combat. Instead, the threat of instability looms large, and this unsettling psychological state is a hinderance on people’s desire to live well.

 

Living with cancer is insidious and destabilizing. A psychologically unsettling state. After active treatment has ended, at least for brain malignancies like glioblastoma, patients enter a period of disease monitoring: MRI (brain) “scans” every eight to twelve weeks. The return (recurrence; regrowth) of glioblastoma is near certain, regardless of surgical success or response to chemotherapy. After recurrence the disease is near universally fatal, and the five-year survival rate is a dismal 5.5%.

 

My working life, that is, “work” in all forms, including: my paid part-time work, and also writing (blog posts like this that you are now reading), speaking, interviewing, advocating, and so on, is taking its toll on me both physically and emotionally. My days end in fatigue, and continuing to tell my story, though with innumerable positive implications for myself and others, is also like retuning to the scene of the crime. I am surely threatened by this destabilizing psychological state. Do I continue to work? Do I retire to a life focused on family and permit myself to let go of self-governed responsibilities, or, like Hobbes, are these self-governing practices the only things separating me from a natural state?

 

Following my son’s ill-delivered but insightful advice: it would be better not for me to assume, but to ask all of those closest to me and to myself, how might I best seek a life well-lived?