Stop the Music: Notes on Good Enough Care

Stop the dancing/ We’ll share the whole pie/ The night sky/ And we can share the particles

– Cosmo Sheldrake, “Stop the Music”

If reading chronic illness memoirs has taught me anything, it’s that the surest way to get on a doctor’s bad side is to show up with a condition that doesn’t respond to treatment.

This is why I was so happy to find the Good Doctor.

This Good Doctor is a neurologist, a specialist in my HMO. When I first came to see her last year, she recognized I was talking about Long COVID without needing me to lead her to it. She ordered an MRI when no one else would, had me do cognitive testing, and got me into speech therapy. She’s one of the few specialists who has not let the treatment wasteland surrounding this illness scare her away from trying stuff. 

Up until meeting her, chasing care was a game of musical chairs. The song comes on and there’s no choice but to get up and start scurrying for another place to land. 

• OB/GYN: “Why are you here? Your symptoms don’t sound anything like menopause.”
• Sleep medicine: “Your sleep study came back clean, I’m not sure how we can help you.”
• Rheumatology: “You don’t have any of the indicators of an autoimmune disorder and your labs are all fine.”
• Speech therapy: “I’m so sorry, my tools are for executive function, but your issue is fatigue.”

One by one, the chairs vanish. 

In the confusion, it’s easy to forget that the place you’ve landed in might be the next to disappear.  

Don’t get too comfortable. 

The neurologist does not even look at us when she walks into the room. She plops down at the computer and pulls the monitor tray to eye level. “So what’s been going on since I last saw you?”

This should not be a hard question to answer. But it’s just enough off from the usual greeting that my mind goes blank. “What’s been going on…” (oh geez, where to begin?) … “since I last saw you…” (when even was that?) It doesn’t help that I’ve been back at work for over a week, and it is now 3:30 in the afternoon in a medical building that requires a 45-minute drive in Beltway traffic. My whole system feels drugged from the exertion. I can barely hold my head up.

I stammer through my answer. “Things aren’t great.” I describe taking medical leave. How my symptoms have not improved, and if anything, they’ve gotten worse.  I ask her if she has seen any progress with her patients based on the Long COVID and ME/CFS studies that have come out recently.

Through a heavy sigh, she keeps typing. We came all the way here but the Good Doctor is nowhere to be found.

“I’m going to be honest with you,” she says. She is still not looking at me. “I can barely make time to read medical journals that get delivered directly to my house. I try, but it’s all just…” She pauses, shakes her head. “Look, if you find anything, email it to me. That’s the only way I’ll see it. But I’m just not going to be doing that research on my own.”

This revelation is simultaneously validating and discouraging. She is saying the quiet part out loud: Managed care doesn’t leave a lot of room for creativity. Or curiosity. Or in my case, even basic care.  

But she is also saying something else. She is saying that neurology – her specialty – is not the best fit for me. She pushes back from the computer tray and casts her gaze to the ceiling. “I’m not sure where ME/CFS lives.” She turns her palms up in the air, weighing invisible options. “Maybe somewhere between sleep medicine and psychiatry?” 

I can hear the music starting again. She’s sending me off. So far I’ve managed to grab a seat every time the song stops, but there are just fewer and fewer chairs. How long before I’m out?

We all have our turn on the other side.

Last summer, a high school senior from rural Virginia contacted me with financial concerns. Our state university had admitted him and our degree program awarded some funds. It was the maximum scholarship but it fell short. His grades were fine but nowhere close to catching a full ride. His story was one of unending troubles. Terminally ill father, mom making barely above minimum wage as a health care aide. His own earnings from an after-school job were needed to help the family and wouldn’t cover tuition and housing anyway. 

We had offered him a spot. He kept insisting that this was the thing that mattered: that we had admitted him. Didn’t we mean for him to come? Shouldn’t we be doing everything possible to make sure he could come?

Increasing the award wasn’t in my power so I suggested a website for searching external scholarships. Then I urged him to explore work-study jobs on campus. His tone, at first deferential, grew terse. “Already looked into it. I’ve exhausted all those options, thank you.” He wasn’t looking for a brainstorm. He was asking me, a gatekeeper at the school that admitted him and whose job it is to educate our state’s students, to offer real help.

I assume this student saw me as someone with access and authority. That view didn’t square with my conception of my role as advisor and sounding board (but not true decision-maker). Where are these piles of money I’m supposed to have? Where is this power to determine funding structures? If I knew, he and every other broke kid in Virginia would get all they need. But this lack of access is a feature not a bug. There are entrenched reasons they don’t give people like me money to give to people like him. 

As I felt my own desperation rise in the face of his, I had to remember he was not being poor AT me. He was the messenger of a deeply broken system. On my less fraught days, I believe I am a part of creating educational opportunities for a wider range of students. I like to imagine that to someone out there, I am the Good Educator. But it’s just so very narrow, this trickle of influence. I doubt I’m really doing good if barriers to educational inaccessibility keep so many out. 

Sometimes I catch myself wishing the people I can’t help would just go find some other avenue for support. I don’t want them to fail, I just want to turn the music on and send them elsewhere, pulling away the chair near me so they can’t return to it. 

Empathy fatigue is no joke. 

I get how stuck this Good Doctor feels. A person might go into a health profession with a deep commitment to healing and service. But like higher education, medicine is a confined area of expertise and can only help a small pool of people privileged enough to have access to care AND whose problems fit a very particular template. Also like higher education, the so-called provider’s ability to provide is hamstrung by the big stuff: funding inequities, misogyny and racism built into every level of structure, the pathologizing of difference, a profit model strangling public goods, the overreach of insurers and wealthy donors. 

My faith in the medical system has always been less than robust. Now that I need medicine more than ever, that shred of faith has been replaced by pragmatic expediency. I suspect the high school student is developing a similar transactional relationship to higher ed, if he hasn’t already.

Game-time strategy.

I had arrived at the appointment hoping to see the Good Doctor. But I’ve played enough musical chairs not to bank on hope. In my pocket is one specific ask: Would an off-label medication be possible? A small study out of Yale in 2022 lent credence to the anecdotal success of a new cocktail of old drugs, laying the foundation for further research. It’s not a treatment for ME/CFS or Long COVID per se but it might alleviate a bit of brain fog. A very small but tangible sliver of possibility. 

When I bring this up, the neurologist seems to brighten. Right there in the office, she searches up the study. Then she tip-taps through the medications, checking dosages and possible interactions. “Okay,” she says, turning towards me for the first time in our entire appointment. “We need to manage expectations here. It was twelve people. This isn’t an answer yet.” 

“It’s not nothing,” I reply. “That’s all I need right now.”

I leave my appointment with one new experimental prescription. These meds are not going to solve any systemic issues, neither the mysterious ones afflicting my body nor the structural ones plaguing medical care. Nevertheless, when my doctor is honest out loud about her limitations but still offers to read what I send her, she is doing something. When she takes a few extra moments to determine if a medication she’s unfamiliar with might be an off-label option for me, she is rising to the level of goodness she can manage given the circumstances. She is being a Good-Enough Doctor. And I’m grateful she is on my team.

Sometimes good enough is enough.

This experience has me reconsidering how I might handle it when I’m the one calling the game. If I could go back to the conversation with my student last summer, two things would be different: 

1. I would work with him to identify one concrete step that I, with the institutional access I do have, can take to help. Then I’d take it.
2. I would say a version of what I want to hear from my doctor now: “This is a problem bigger than you. It sounds like you’ve looked into all kinds of options, and the lack of real help isn’t because you haven’t tried hard enough. It isn’t right or fair that there isn’t better support for deserving people like you. I’ll keep my eyes open.” 

Of course, that last part is key. Actually keep open — eyes and mind too. Hold this person’s struggle at the center while advocating for more funding, more equity, more creative possibilities. 

The least we can do as a Good-Enough [Professional/Neighbor/Loved One/Friend] is pause the game altogether for a moment and sit with our fellow human. Share the moment of unfairness and uncertainty. Be generous in the care we can offer as they figure out their next move, as they look for a safe place to land.