To handle distress: Do as much You as possible

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss

I’ve read many great articles about homeschooling, setting up the optimal space for working from home, and activities to engage kids during long stretches indoors. Online fitness classes are easy to find. Bands are streaming sets online, and Netflix rolled out the very cool movie night watch party feature to connect with friends virtually. Many employers are scheduling recurring “coffee meetings” to bring their remote employees together. Universities have shifted in-person instruction to online lectures.

These are all incredible changes that happened within a matter of days! We should be encouraged by these moves to act in a unified way to protect the health of our communities. Still, we have plenty of work to do to reinforce adherence to CDC guidelines, and it would serve each of us well to heed the advice of epidemiologists and healthcare workers–like my wife–who are sharing their experiences from the frontlines.

This post is not to reiterate those cautionary tales, and I do not want to repeat the terrific resources that so many have made available.

Instead, I write this post to address one fundamental question: How do we feel normal, when so much around us is changing?

 

Over three months, beginning in May 2016, Whitney and I reacted to the news that I was diagnosed with the aggressive brain cancer, glioblastoma. With this diagnosis we were confronted with my mortality: the dismal five-year survival rate for GBM is less than 10%. Yet this existential threat to my survival, Whitney’s husband, the dad to our kids, was only the tip of the iceberg. Just beneath the rolling waves of serious illness was a greater threat: the complete disruption and reorientation of our lives.

In short order, I stepped away from my full-time career working in learning and organizational change management, Whitney stepped away from her full-time position at the hospital to care for me and our boys, and she shifted to a variable schedule, with enough hours to maintain benefits eligibility, requiring that she commit to working every weekend; we sold my car because my persistent seizures made driving a risk to myself and others, and we sold our condo both because the second-floor walk-up was incompatible with my limited mobility following surgery and the mortgage seemed impossible to maintain after losing my salary.

By Fall 2016 our lives were barely recognizable to what they had been only months before.

 

I share this because the disruption and the reorientation of daily life may feel a lot like what you’re facing now in response to social distancing and other mitigation or suppression efforts to slow the spread of the novel corona virus or covid-19.

I want to offer the advice that I give to newly diagnosed patients and their loved ones who reach out to me through this blog or through Twitter.

 

I am frequently asked this question by newly diagnosed folks who must reorient their lives in light of serious illness–usually for those reaching out to me, the diagnosis is brain cancer, but I think the advice generalizes.

Imagine that you walk into an office visit with an oncologist, and you walk out with the information that your life expectancy is now measured by reference to “median overall survival.”

This is not unlike the news all of us are reading today, in light of covid-19. Our communities, the number of presumptive cases, the exponential logarithms that predict “points of no return” to exceed hospital capacity, and the predicted mortality rates, both mortality for covid-19 but also mortality rates for other life-threatening events like heart attack that are increased because hospitals reach capacity and clinicians and beds are unavailable, this news is a difference in degree, not a difference in kind, from the one-on-one giving of diagnosis between a doctor and those within their care.

“Adam,” I am asked by folks facing cancer, “What now?”

In simple terms, this is my response: Get back to doing something that feels like “you,” just as quickly as you can!

 

In the hospital after brain surgery, and then in an inpatient rehabilitation hospital where I re-learned to walk, bathe, feed, and dress myself, very little of my life looked like the guy who dribbled a soccer ball outside with the kids or littered the countertop with books and journal articles to write papers for grad school.

I was on a locked brain trauma unit. I was using a wheelchair. My family could only visit on limited hours. Even the clothes that I was used to wearing didn’t fit because my body had swelled because of high-dose steroids to control brain swelling.

But I could read, and I could write, and I could continue working out the details of the philosophy of science literature I had studied in grad school.

 

Clearly this is a niche market! What feels like you may look nothing like this! But what’s important is that feeling like my life was totally disrupted, I could reclaim some of the activities that felt normal; that felt like me.

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Adam journaling days after brain surgery, late-May 2016

So as you scroll past the alarmist articles, please for your health and the health of our communities, be informed and take action! But if you’re feeling overwhelmed and distressed; if you’re feeling like nothing is normal. If you stare at yourself in the mirror and wonder, “What now?”

Try doing as much you as  possible, and you may find that when the world is disrupted and you must reorient your life, you can trust that your values, goals, and purpose will carry you through.

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.