Values Alignment

Seeing the world through a black eye

A quick reminder to subscribers: Paid subscriptions resume on January 1, 2025. If you were previously a paid subscriber, you can expect billing to resume. I’ll share more instructions on the 1st to cancel (or upgrade) your current subscription tier. I’ll also share something pretty special for paid subscribers that day. xx. <3 -a.

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There’s a thing in serious or life-limiting illness that goes like this: After receiving a diagnosis, you’ll discover what’s really important, what really matters.

This may take a process of acceptance, a little therapy, and some good old-fashioned being with your thoughts, but go through the work and come out the other side with a renewed sense of what you value in life.

There’s a spurious second assumption that follows from the first: Discover what really matters, then focus on doing that.

This, I have to tell you friends, is bullshit.

Few of us have the resources to “do what you love.” We’re either scraping by on meager social security disability income or we’re continuing to work to earn a living, but our effort on the job leaves us too drained to pursue the values-driven work that we’ve discovered “really matters.”

Some of us can’t even get out of bed today.

It’s all good, but no one’s getting ahead in illness. These issues are endemic to our productivity-driven culture that sees accomplishment and overcoming adversity as individual pursuits that let everyone else off the hook for caring for the vulnerable. Imagine if serious illness and financial toxicity were treated as community issues that we all have a part to play in addressing. We manage to provide this when people we love or people we can see ourselves in are facing challenges, but we’ve not managed to scale this personal support to systemic changes.

Our family affords a modestly comfortable life, and the kids thrive in their lives of friendships and activities, but it’s mostly debt and GoFundMe’s that have made that possible. Again, this is fine. Whitney and I are adults, and we make our decisions and prioritize our expenses. I treat myself to a new ballcap every so often, and if we get a date night, Whit and I will be enjoying a nice meal.

(It’s maybe worth emphasizing that a ballcap and a nice meal are “luxury expenses” for us, but that’s not the point.)

We’ve received a tremendous amount of help from our community. We are truly privileged and fortunate. We recognize the disparity between us, living paycheck to paycheck but still living, and those who are unable to maintain housing or food security.

This is neither to kvetch or to guilt others. The point of this so far is to let you know that our lives are as middle-class as yours; we just have a little terminal brain cancer sprinkled on top. We are thankful daily that I’ve lived nearly a decade with a thing that was supposed to kill me in a few years. Each day with my kids is a day we didn’t expect. There is a joy there that materialism could never replace or improve.

But the idea that serious illness affords an opportunity to travel, pursue passions, or focus on what really matters is not the norm. We may land on “what really matters,” but that doesn’t promise a reprieve from life’s responsibilities to allocate our time and effort to those things. A donated trip from a nonprofit or sponsoring a family for the holidays is uplifting, but we’re back in it for the other 50 weeks out of the year.

While I’m at it, I’ll raise that there is also a healthy bias in nonprofit and media coverage of illness. Not a bias that is healthy; a bias toward the healthy. Run a marathon, hike a trail, finish med school, hell, even live longer than expected, and you are celebrated and “such an inspiration.” You get your face on marketing collateral and are greeted in rooms with applause. Nobody’s doing an end-of-year fundraising campaign that opens with:

I feel like shit.

Fuck you and leave me alone.

Where are the chips?

Accomplishment and meritocracy are no less the ideal in disease spaces than in general spaces. It’s tough to confront the reality that illness is pretty much always hard, but it’s difficult to motivate donors with a room full of sick people with cognitive impairment and grim prognoses.

Accepting illness and considering shifting norms to better support vulnerable populations requires policy changes. There is something else that we can discuss now that is more personal.

The truth is, no amount of soul-searching will restore you to a truly meaningful life or not on its own. Far from pursuing our dreams, most of us are lucky not to go bankrupt. If we look to Washington politics, even our benefits are on the line these days.

But I’d like to turn my attention to my community of seriously ill siblings. Because all of us will end up aging or with serious illness anyway, I’m sort of turning my attention to you, too!

Societal norms will continue to prefer overcoming odds stories, and I’ve not found much appetite to expand social services at a federal level; we must find another way to confront our illnesses and take them on our terms. For this, we can revisit and refine our opening assumption.

There really is a thing in both illness and aging that helps discover what’s really important, what really matters. And yes, that emotional and psychological work is required to get there. No one lands on their values by accident. But from a place of values discovery, we can flip the script on the world and make meaning irrespective of material resources.

I feel like a clarificatory note is important here: What I am arguing for could be understood as a sort of social pacifism; a negotiated offer, well, we can’t have that, so here’s this. That is not my aim. My politics seek an expanded social services state with community programming, robust public works, and a thriving working class with easy access to housing, food, education, healthcare, safety, capacity building, and generational wealth.

Until we get there, I’ll continue advocating and engaging in the political process. In the meantime, here is my proposal: Do the work of values discovery and alignment, and in the absence of resources to do what you love, we can resist the societal pressures to root our value in productivity and instead, root our worth in living in alignment with our values. We can ask ourselves, who is the dad/partner/spouse/friend/sibling that I want to be? How do I live into that version of myself?

Illness delivers nothing but a punch in the face, but sometimes, it’s easier to see the world differently with a black eye. I think we can get some of that resilience back or make a little more meaning when we stop listening to what other people think is important and find that out for ourselves. Then act like it. Maybe not in a once-in-a-lifetime vacation to Europe, but in the way you hug your family or choose to live each day.

That’s maybe what I’ve learned really matters: a sincere hug and some agency in my life to be me.