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March 15, 2018

I lived with undiagnosed and untreated anxiety disorder for almost four decades. By the time I finally knew that this was not normal and sought out help, a little more than a dozen years ago, I was also at the beginnings of a profound change in my physical health, one that has led me ever since on a merry chase through hill and dale… well, mostly dale. Also tactless deserts, dry river beds, and all the other landscapes favored as metaphors by the army of the chronically ill.

Did decades of constant bombardment of cortisol and its myriad allies contribute to the physical state in which I find myself? The loss of an adrenal gland and the breakdown of my hypothalamic-pituitary-adrenal (HPA) axis certainly suggests the possibility. Did half a lifetime of uncontrolled anxiety contribute to my frequently compromised immune system and lifelong sense of myself a “sickly”? For sure.

In the binary thinking of modern medicine, then, it would be all too easy to see mental health challenges as at the root of all my physical health problems. And yet: I was born with severe asthma, growing up in what was at the time one of the most polluted cities in America. Did that early childhood experience of midnight suffocations and countless clinic waiting rooms contribute to the early onset of my anxiety? Which came first: the fried chicken or the cracked egg?

I’ve been pondering this puzzle of late not because I believe there is an answer; in fact, I am confident the very question is flawed and counterproductive. I know all too well that my physical illness exacerbates my mental illness, and vice versa. They are inextricable and any treatment that does not address both will ultimately serve to make a bad situation worse. And yet, in the manichean system of health care under which we operate—in which mental and physical health reside on two sides of a firewall with only the most limited and delicate of diplomatic communications transmitted between them—a patient is forced to pursue the two avenues of care independently and with all the delicacy of a double-agent.

After many years of relatively well-controlled anxiety symptoms, about a month ago I started to develop intense anxiety symptoms again. They seemed to come out of nowhere. They were both relentless—from morning to night and into a restless sleep—and inescapable. My racing mind‚ suddenly in the grips of hyper-vigilance and all-consuming dread, could latch on to anything as an occasion. And as effortless and endless as was the latching, the letting go proved seemingly impossible.

What had triggered this sudden influx of debilitating symptoms? Had my anxiety medication, effective for a dozen years, suddenly lost its efficacy? Had a change in my endocrine system—or elsewhere in my troubled ecosystem—led to a sudden change in the neurochemicals coursing (or failing to properly course) through my system? All I knew for certain was that one minute I was doing ok, and the next moment I felt broken. It was now up to me to pursue parallel lines of inquiry with therapist and psychiatrist on one side and internist and other specialists on the other.

And never the twain shall meet. When I first wrote my primary care provider about the sudden changes, she promptly sent out word to my nephrologist (who guided me through my adrenal crisis a few years ago) and my endocrinologist. Electronic medical records, so ubiquitous at a large medical institution like Ohio State over the past decade, made this communication almost effortless. But of course the system provided no way for her to communicate with my psychiatrist, whose practice exists outside of the Ohio State system and whose discipline exists on the other side of the impenetrable border.

So, rather than an integrative approach that considered the tangled weave, I was forced to choose a strand a follow it as far as it might go. We shall see where it leads, but at least I am fortunate to have exceptional practitioners on both sides of the iron curtain. I just cannot help but imagine what kind of progress we might make if ever the twain could meet.

September 4, 2017

In my Narrative and Medicine class this semester, I asked everyone to share with the class blog a narrative related to medicine/health/illness in order to introduce themselves to the class. This was my contribution:

When I was a toddler the doctors told my mother I had cystic fibrosis. I didn’t. They were bad doctors. Or maybe they were good doctors, but we were poor at the time and seeing disinterested caregivers at the clinic. My father left my mother shortly after I was born (or precisely when I was born? I can never get the chronology straight and not surprisingly they both have a different version of events), and my mother soon left Columbus with her first-born me and headed back to her native New York City where she soon discovered that I was not a font of health. New York in the late 60s (and throughout my childhood in the 70s) was incredibly polluted. The year I was born, and shortly after my mother and I arrived in the city, there was a major smog event in the city —big enough to even merit its own Wikipedia entry. I have no proof that the timing led to my health problems, but it is the closest I’m going to come to getting a Wikipedia page so I’m going with it.

I mention the cystic fibrosis misdiagnosis—however short-lived it was—not so much because it certifies my lifelong sickly creds, but because it marks the beginning of a long, on-and-off-again career on the diagnostic merry-go-round. These past several years especially have been an often dizzying ride in search of a name—a diagnosis that will unlock all my ills and give me a nice ribbon to wear and an internet community of fellow-sufferers with whom to bond, complain, and fund-raise.

In the long run, however, I sometimes wonder if I am not fortunate to have never arrived at a name for what my doctors and I now call my “underlying condition.” After all, along the way, I have learned about a broad range of conditions, gotten to know dozens of caregivers, and I have—with the help of my caregivers and family—learned to manage my changing health and symptoms (most days, at least). And without a community of fellow-sufferers to tell me what to expect next—which, if I am honest with myself, is what I really crave in a “master” diagnosis—I have had to learn to start letting go of my desire for visions into the future and actually deal with my illness one day at a time. It’s not easy and I can’t say I love it, but I know it is good for me—better at this point than any name for my autoimmune, respiratory, and neurological cocktail will likely be.

Lucky Man

March 19, 2017

I am sick—by most measures, a particularly exasperating and unproductive kind of sick. Although as compliant as can be, nonetheless for my doctors I am a most difficult patient, whose chronic illness remains only partially understood despite hundreds of hours attention from the specialists and consultants caught up in my case. For my insurance company, I am expensive, maddeningly so—requiring almost two dozen prescriptions for pills, respules, inhalers, and medical equipment, with no end in sight (indeed each year brings still more). In addition, I require regular tests, scans, and specialist follow-ups as my doctors continue to search for that elusive byte of objective data that might just give them the answer, the name, a sense of mastery over my failing body—even if that mastery is only the certainty that, yes, my body will continue to fail.

I am, nonetheless, the luckiest guy I know.

I have been “sickly” my whole life, subject to more than my share of infections, surgeries and debility. But I first became truly “sick” about two years ago, in the aftermath of one of those frequent infections—a non-descript virus—which left in its wake a body somehow short-circuited. 

Much of the first year of my care was devoted to attempting to identify what was happening, ruling out, one after another, a wide range of ticking-time-bomb diagnoses. It was also spent in the pharmaceutical kitchen seeking out the proper recipe of medicines and therapies to keep me vaguely functional: three medicines to keep my wildly fluctuating blood pressure from going too high or too low; physical therapy to help me stop falling up and down stairs now that solid ground had become a rolling ocean; various medieval contraptions to keep blood volumes where they were meant to be; medicines whose names sound like Simpsons parodies (Provigil!) designed to keep me from getting wholly sucked into the fog that invades my brain a couple of hours after waking. And so on. 

I have been sickly my whole life, but also very lucky. Because I have never wanted for care.

After a year, things had stabilized, and there was good reason to believe that while a cure might not be in the offing, at least symptoms would remain largely as they were for the forseeable future. But then, a few months ago, things began to unravel further, with no more explanation and no more answers than we had two years ago. 

In just the last couple of months, I have had a pulmonary function test, a bone marrow biopsy, and some dark version of an EMG that involves high-frequency repetetive nerve “stimulation.” All three of these tests require highly-trained individuals to administer the tests, not to mention additional experts and time for their interpretation. The pulmonary function test showed a marked decline in respiratory function. The second two tests, however, failed to provide any answers as to why.

Still I maintain you will not find someone more fortunate than me.

I say so not because I am profoundly at peace with my lot (anyone who knows me would laugh at the suggestion). Nor have I found religion, seeking my reward for suffering in some afterlife. Neither do I have any faith that a cure or even a definitive diagnosis is coming. No, my good fortune rests in knowing that I have access to all the health case I need and that the chances of my losing that access remains relatively slim, even as my body betrays me in new ways.

As long as I can keep working, I will have my insurance through my job. And if I worked in almost any other field—and occupied within that field any other position other than that of “tenured professor”—I would have reason to be very anxious about my future right now. Unlike so many others, I did not lose my job following the crash of 2008. Nor is my job even now at risk, despite declining enrollments in the Humanities in the wake of that crash and other factors that are driving students away. I did not lose my job when I got sick. In fact, I didn’t even miss a day of work. You see, I was on sabbatical when I first got struck down. While it wasn’t the most productive sabbatical in terms of my scholarship (to put it mildly), it allowed me to focus on what became a new full-time job, one of constant tests, appointments, and worrying.

Even now, I continue to do my job. Not as well as I used to, to be sure. Certainly I am slower at getting things done, as pain or mobility or memory challenges leave me behind in all things. But I am adept with technology, and I have found new ways to remain available to students and colleagues in spirit even as I often cannot be there in the flesh. 

And because I am a tenured professor, whose job is as secure as any position in America aside from Supreme Court Justice, I have the flexibility and autonomy to adjust my schedule as needed to make appointments and show up for tests as the ongoing efforts on my behalf continue. 

Tell me, am I not the luckiest guy you know?

Now, you can question the validity of tenure, and certainly there are reasons to question its fairness at a time when fewer and fewer academics will ever secure its benefits, as universities increasingly shift to a contingent, insecure workforce and positions like mine become as rare as the dodo. But is that not but one more marker of my incredible fortune? Had I been born a couple of decades later, I would almost certainly not have tenure today. Which means, I would almost certainly not have insurance today. Which means…

What would my life look like right now if I did not have the certainty that my care was ensured—that my medicines, tests, appointments and equipment would all be readily affordable thanks to a job from which I could not be fired... Well, barring, of course, gross misconduct or gross negligence. The "misconduct" I do not worry about: I am devoted to my job, my students and my colleagues and would do nothing to harm them. The "negligence," on the other hand, has become a growing source of anxiety as I watch my powers diminish. Will there come a time when I cannot finish grading my papers? When I cannot teach my classes? When I cannot get out of bed at all?

But even there, I am lucky enough to be able to temporarily tamp down those anxieties before they fully articulate themselves, secure in the security of my position.

Yes, I am lucky. But of course, I am no luckier than any one of millions who live in societies which recognize health care as a right—societies that see providing care to all citizens as a fundamental reason for the existence of society. Someone reading this from France, Botswana, or Sri Lanka might reasonably question my sense of my good fortune, because for them health care is a universal right. But anyone from America will surely agree with my self-assessment—particularly the many millions for whom secure, quality health care is just out of reach, even with the remarkable affordances of the soon-to-be-extinct Affordable Care Act.

So perhaps I am not so lucky after all. If I were a citizen of Denmark, Trinidad and Tobago, or Argenta, my care would not be dependent on having inadvertently won the chronically ill employment lottery. 

And in truth, now in my fifties, it is getting harder and harder not to think about a future in which I can no longer work. Who would possibly wish to sell me insurance on the “open market,” once Congress gets rid of the Affordable Care Act? If forced to choose between the drugs that help me breathe and those that help me navigate the cognitive fog and those that help me temper the neuropathies that run roughshod across my body, how would I make that decision? If offered the prospect of a test that might, finally, provide the answers we have been looking for, would I take on the financial burden knowing that the odds are that it would provide the same non-answers we already know so well?

Still, even enmeshed in these dark thoughts about the future, I am profoundly lucky. After all, I have a spouse who continues to enjoy my company even as I am surely less good company than once I was. She is extremely healthy and very well employed. Her insurance will cover me if I were to lose my own. As long as … 

Which reminds me, I must buy her flowers. After all, it is thanks to her that I remain the luckiest man on the face of the earth.

Fragment 1

September 2, 2016

There are times when every footfall is as though through a field of melted cheese, when the atmosphere is so thick with fog it has entered the brain and begun to solidify, and the bleachers are full of screaming schoolchildren hurling rusty darts at my slowly moving target. These are days when insights and thoughts come as shards through an unfocused kaleidoscope.

These are the times when the best I can come up with are fragments. Like this one.

"Holy forgiveness! mercy! charity! faith! Holy! Ours! bodies! suffering! magnanimity! Holy the supernatural extra brilliant intelligent kindness of the soul!" -- Allen Ginsberg, "Footnote to Howl" (1955) 

"A doctor's first duty is to ask for forgiveness." So Dr. Isak Borg, the protagonist of Ingmar Bergman's Wild Strawberries, is informed by his interrogator in his disastrous dream examination at the end of a career, and a life, left largely unexamined.

A patient's first duty is to beg for mercy. There are no cures, only sentences. No relief, only new pains. There is only mercy. It is all we deserve, and all we can ask for.

But mercy and forgiveness together can work miracles. Mercy and forgiveness, willingly conspiring, are the closest we will come to the divine—the sacrifice of hope and hubris for the shared burden of failure's tender embrace.

Wounded Healer

August 30, 2016 16:28

This week's guest post is a poem by Dr. Erin McConnell, an Internal Medicine and Pediatrics specialist at Ohio State. I had a chance this summer to hear Erin read some of her creative work about health and medicine, and I asked her if she might be willing to share some of it with Patient Time. She introduced this poem: "a Type A (is there any other type?) physician explores her own frustrations with a plague of chronic injuries"

I also got a chance to get to know Erin's goals and philosophies as a health care professional, some of which are beautifully articulated on her bio page at the Wexner Medical Center: "I spent a fair amount of time as a patient growing up," she writes. "This showed me the impact (for better or worse) a physician can have on a patient’s health. Being a patient is a universal experience. As doctors, we need to bring those recollections to our patient care interactions."

Beautiful stuff, like this poem.

_____________________

wounded healer

i amass injuries like a scout
rarities, high in tariff,
applied like badges
or bandages

hamstrings half severed
torn labrum—which sounds obscene—
but merely, a rip to hip tissue
patellofemoral syndrome
more a tropical condition
or destination

stress fracture, an obtuse
acquiescence to overuse
the fine line
when discipline becomes abuse
and running, a ruse
for feeling of use

Achilles knew well
when inflammation befell
the calcaneal swell

posterior tibial
tendinitis
trochanteric bursitis
plantar fasciitis

a recipe for disaster
or a half marathon

Frieberg's infraction
result of impaction
tarsal inaction

a body in action
moves towards entropy
looped sinews strewn
haphazardly hewn

the message crystal:
cease and desist.
but you continue to place
the Divine Caller on hold

Scanxiety and Scanger

August 17, 2016

This is the first of what I hope will be a series of guest posts by writers sharing their experiences as patients, care-givers, family or practitioners.

Today's post comes from a friend whose inspires me to try and think differently about what it means to be a patient—and about the ways in which the doctor-patient relationship is only part of a larger script desperately in need of revision. She chooses to share this story anonymously.

____________

It starts with a date on the calendar that you see out of the corner of your eye.

No, actually, it starts in your doctor’s office, your oncologist sitting across from you with your thick medical file resting in the crook of her arm, back when you had a paper file; now she sits across from you scanning the computer screen.

You know it’s coming, as she reports, “Well, it looks like it’s been [insert three months, six months, almost a year, depending on the direness of your current situation], it looks like it’s time for an [echocardiogram, bone scan, CT scan, PET scan, MRI, depending on the current situation]. Maybe you were expecting this; maybe you knew it was time. Or maybe you’ve forgotten, temporarily, that you are the kind of person who gets scanned and it puts you in your place.

“Oh, okay,” you might say. Or you might go for sarcasm: “Yay!” Dr. Clarke looks across at you with only a hint of humor. She knows more than you do about this process: how the scans work, how to read the resulting images and the report of the radiologist that goes with them. She can explain it to you if you ask, and probably has, not that you really remember or, though you understood at the time, could explain it now. She knows what it is like to tell patient after patient that it is time to be scanned. In this room, in other rooms like and unlike this one, she has sat with patients in relief and anxiety and fear. She knows what it’s like to make that call or to look you in the eyes and report after, what the scans have seen. She’s done this with you, so many times. Has she ever been scanned? You’ve never thought to ask. Would that be inappropriate, to ask?

Though sometimes it starts because you’ve initiated it; because there is a mysterious pain and either it seems suspicious enough or it’s almost time for a scan anyway and so rather than saying, “Let’s just wait a while and see what happens,” Dr. Clarke says, “Well, let’s do a scan.”

I remember my first CT scan as a cancer patient not because it was scary, but because looking back I now know that I didn’t know enough then to realize that I should have been afraid. David was there, as he had been, in so many examination rooms, but then so was the pastor of my church, and I remember thinking, “Why is he here? Is this really necessary?” My father is a minister, and so I knew that they are always at hospitals, visiting parishioners, so I chalked it up to that, mostly. But then I also thought maybe it meant I was supposed to be very afraid.

Why wasn’t I afraid? This was the scan that was supposed to tell them if my cancer had already spread. I knew enough to be afraid of that. Looking back, what I think was going on here, is that I was still untouched enough, still 34 in the way that I had been 34 a few months before, to assume that it was reasonable to expect that it wouldn’t get worse, my prognosis.

Scan days seal you into closed spaces. The air is stale, the sun comes in hot through thick glass panes in the waiting rooms that have windows, though scans don’t tend to happen in rooms with a view. Scanxiety, I’m sure, can be experienced in many different ways. Sometimes I think that I have the opposite of scanxiety. I shut down, my thoughts turn syrupy, I can feel my body flatten, the way my cats hunker down in the carrier when we take them to the vet.

There’s a script to be followed, in the transition into the scan. You will encounter volunteers, intake professionals, nurses, and technicians. You won’t always be sure which is which. You might see the same people repeatedly, but it might be a new person at any given time. It is not a satisfactory occasion for interaction, and it is difficult to form meaningful relationships under such conditions. The same must be true on the other side of things. How many people must they see in a day, being scanned for however many different reasons? The nurses will be, on the whole, very friendly and kind, and it will be embarrassing to you that you have a hard time remembering if it will be Sue, Emily, Karen, or Rose who works in the bone scan intake or the CT annex waiting room. They seem understanding about this, though, and reintroduce themselves to you every time. None of the nurses, apparently, have last names. Your own heavy-lidded calm makes it difficult to respond sincerely to whatever cheer they might offer.

There are injections, and/or things to drink that come in different flavors. Do you want banana, vanilla, multi-berry? None of these things will actually taste like their descriptors, so you don’t need to worry about ruining a flavor you like. If you are getting an injection and your veins are small, you might need to think ahead. If you have a port catheter, remember to tell them that they should put in a call to the nurse who is authorized to hook it up or you’ll be sitting on the slab with your pants pulled down while they get her. If you no longer have a port catheter because it malfunctioned and floated around in your heart for a while before they figured out what was happening and then removed it in a daring procedure that they called in other surgeons to watch, then think about your veins. Have you been drinking enough fluids? You don’t want to make it hard for them to access your veins, or they might tell you that you need to get a port again.

The way it should go is that you have your scan and you thank the nurses and technicians and go home, and then the nurse calls you and tells you that Dr. Clarke said to let you know that nothing has changed and that everything looks great. Then you tell David and you give each other a high five and say, “Yay, let’s not forget about this moment—let’s celebrate,” and then you forget about this moment because you really need to get those papers graded, and I guess let’s just have spaghetti tonight, we’ll celebrate later.

Sometimes you are radioactive, because you’ve had a bone scan injection that is delivered in a special lead sleeve. The sheet of instructions you take home with you tells you that you can resume your normal activities and you aren’t dangerous to others, but that you probably should stay away from children and be aware that you might set off the alarm systems at an airport if you were going to travel that day. You might wonder if you probably shouldn’t hold your cat, or if it is really ethically suitable to go to that committee meeting.

Sometimes the barium in your digestive system causes embarrassing noises and requires frequent trips to the bathroom, and you know it isn’t ethically suitable to go to that committee meeting.

Sometimes it takes longer than it seems like it should for the doctor’s office to call you back after your scan, and you wonder if that means something is wrong. This is the point at which you realize that that slowed-down feeling you’ve been experiencing isn’t calm at all, but a stasis immediately available for transition into feelings you more readily experience as panic, such as racing heartbeats, sweats, nausea, irritability, unexpected crying, and inability to focus on your grading.

My friend Catherine once asked me if seeing references to cancer unexpectedly in the world was hard. We were walking on campus and had just passed a lawn sign advertising a “run for the cure.” It had freaked her out on my behalf, even though we hadn’t even been talking about cancer—we’d been complaining about space issues in the writing center. Catherine is one of the few people on my campus that even (that I know of at least) knows I’m living with metastatic cancer. We talk, and I trust her.

Did the sign bother me? Not really—I hadn’t even noticed it. It is true that I experience brief but inappropriately sharp and irrational fear when, paging through a magazine, for instance, I inadvertently come across one of those advertisements for a hospital that features a kick-ass cancer patient front and center that personifies cancer and has the patient address cancer directly—have you seen those? They say things like, “Cancer, your days are numbered!” or something empowering that’s supposed to make you want to go to that hospital. Those ads do freak me out, and I tiptoe past them and try not to make eye contact with the cancer patient models. It’s the power of jinx: you don’t taunt cancer—don’t draw attention to yourself! Why would you want to antagonize or menace cancer? Look away! Look away!

But I’m not usually like that.

The thing that gets me is pregnancy; I mean the fact that I will never have one of those. The loss of pregnancy, fertility, child-rearing is gargantuan. And it is its own thing. And I can’t even begin to talk about that here.

But it has also been deeply embedded in the divide between illness and health, for me. In the obvious ways, as you might expect, because my cancer treatments deliberately counteract my ability to have children because my fertility became part of the problem that my cancer treatment was trying to solve. So there’s that.

But there’s also because speculative pregnancy was such an unexpected player in the story I had to tell my husband about what might be happening to us, before we even knew what was happening to us. We had been married just over a year. We were in the kitchen, and I had to tell him that there was a cyst—we thought it was a cyst—and I needed to get an ultrasound, but that it was probably nothing. So I started by saying I needed to tell him something about my doctor’s visit and I saw it but I kept talking—I plowed through and things went on and we never talked about what I saw.

What I saw was the same thing on the faces of friends and colleagues when I first told them the slightly modified version of that story, over and over, once we knew it wasn’t a cyst, that began, “I need to tell you something . . .” which at that point continued, when I saw that thing, the corrective, “It’s not a good thing,” which was the slight smirk of someone who thinks you are about to tell them that you are going to have a baby. I haven’t been quite able ever to shake these linked memories; I’m good at forgetting things but this constellation lingers. And it lingers in the story I tell when I have to remember how long I’ve been living with cancer, when I make the calculation that it is twelve years, for example. The child that I might have had rather than having cancer, the twelve-year old. So there’s that.

And then there’s one more thing. A story that really helped me, initially, as I was making my way through chemotherapy and surgery and baldness. A story told by many tellers, in different configurations. It would be accompanied often by a picture, a picture of a young, stubby-haired woman with a baby on her knee. It was told in online support group forums and on websites for young women with cancer. It was (and is) such a good, good story. But it wouldn’t be mine. And the story that helped me make it through those losses became another kind of loss.

So that’s a long answer to Catherine’s question, and I didn’t go through all of that when she asked me if references to cancer freaked me out. But I have to go through all of this to fully explain why it is hard when, on the form you fill out before you have your scan, you are asked if it is possible that you might be pregnant.

No, it isn’t possible. But they don’t leave it at that, and I do understand why. At least what I do understand is that you don’t want to scan a forming child: makes sense. And the hospital doesn’t want to get sued, and so if you fit the profile of someone who might possibly be pregnant and not know it—if you are in your thirties and not on birth control and are no longer having periods, for example—they press the issue.

The first time this happened they required me to take a pregnancy test before they would scan me. If I’m remembering accurately, this was before I knew that I really wouldn’t be able to have children. I remember being surprised by feeling slightly giddy in addition to being anxious and annoyed. What if by some miracle I was pregnant, after all we’d been through? That would be interesting. I knew I wasn’t pregnant. But the idea of the possibility that I could—someone else was convinced enough that I could that they wanted confirmation that I wasn’t—was very powerful. I wasn’t, and we proceeded from there.

I had more and more scans. And it took me by surprise, every time for the first few times, when once again they were not believing me when I assured them that it wasn’t possible. Then it got a little old. And it became part of the broader trauma of getting a scan. Knowing it was coming was no better than having it take me by surprise.

But I had David, who listened, and told me to talk to Dr. Clarke. And Dr. Clarke listened, and we tried to come up with a better script: what could I say that would help them hear that it wasn’t possible? I wrote it down. And my therapist listened, and said, “why don’t you tell them what you’re telling me?”

And the next time it happened, I tried to say what I had written down, but I flubbed my lines; it wasn’t working. Karen, the nurse, looked troubled as she sat across from me with the questionnaire in her hand. I changed tactics and did what my therapist suggested. I said the thing that started, “It is hard for me, when . . . “ And wasn’t it possible for there to be something in my file? And Karen listened. She made some notes and she told me she would bring it up in “the meeting.” And she must have because the next time they believed me when I told them that it wasn’t possible. I learned Karen’s name.

And things went well for a long time, despite the part about having cancer.

And then two months ago, in the vestibule of a claustrophobic trailer parked up against the side of the hospital, where they keep the PET scan machine, it happened again. No, it wasn’t possible. No, I couldn’t remember when I had my last period—it had been years and years since I’d had a period. No, I wasn’t on birth control but I was on several medications (see the provided list on the form) that suppressed estrogen. Chemotherapy sent me into menopause before that, even. It’s in my file. Do I really have to tell you the last time I had sex?

The nurse was getting frustrated with me. She was considering sending me for a pregnancy test. I couldn’t remember my script, and I didn’t know what else I could say. There was no way I was going to take a pregnancy test. Her compromise, written on the form that she then placed next to me on the table:

Patient reports that she is infertile.

The scan went fine. A nurse called to tell me that Dr. Clarke said that nothing had changed and that everything looks great.

But I am at a loss. To whom do I go now? Who needs to listen? These transitory experiences, these interactions outside of the physician/patient relationship, have stories to tell and scripts in need of revision.

This Plot, This Pound of Flesh

August 2, 2016

I haven't written here since the new year began for mostly happy reasons: I am back at work, teaching (yay!), editing and writing (huzzah!), and attending meetings (as I said: mostly happy). Getting through this past semester—and a full summer of conference travel and an intensive seminar—feels like a major victory. In the early months of 2015, when I was increasingly unable to make it to campus to teach, I wondered if I would ever return to my former life. Now I am ordering books for the fall semester, editing a new journal, organizing a symposium, navigating deadlines.

Of course, this is not my former life, even if I can go stretches—sometimes even days—forgetting how much has changed. It is easier to list the negative changes that the last couple of years have brought my way, but more urgent to tally the positive ones. 

For example, I garden now, spending hours with my hands in the soil, or gently encouraging peas to take hold of the trellis I have constructed for them. For some 25 years—the majority of my professional life—I have eschewed the outdoors and all that comes with it—bugs, sun, dirt. Now I find I cannot live without touching plants, without dirt under my nails. I did not plan this, but neither do I shy from it—as once I would have, instinctively—despite its hackneyed obviousness. 

Or, another: my arms—formerly gleaming fishbellies—are now covered with tattoos, with more blossoming each month. 

Who is this man with tattoos? Is he tapping into some deep well-spring of symbology and ritualistic pain on the road to enlightenment? Or he is just mired deep in midlife crisis, desperately seeks a "cool" that might ward off accelerating decay?

Who is this man who gardens? Is it a more authentic version of myself, one I could not see while still wholly in the grips of professional ambition and institutional politics? Or Is it an aging, saccharine Hallmark-version of myself, taking solace in green shoots and daily micro-harvests to ward off the declines of my own plot?

Honestly, I don't care—and this may well be the greatest change I can measure when I place myself heel-to-heel with the person I was before I started falling up the down staircase. The search after an "authentic" self now seems to me as profoundly pointless as worries about being perceived as "cool"—or being perceived as caring about being cool. All the questions—profound and pathetic, cosmic and paranoid—that for five decades fueled my anxiety attacks and sparked my pre-dawn insomnia ... they are gone. I try and summon them and they speak to me as if in a foreign tongue, or from an alien species whose needs and ambitions differ from my own as much as those of a sea sponge.

Freed from these questions whose pursuit brought me absolutely nothing, I feel lighter ... but also perhaps inevitably smaller, less intensely plugged in to the conversations around me. I suppose it will eventually be time to figure out how to return to questions and quests—ones properly suited for a new body, a new self. But still, for now, I am enjoying the vacation from my old self, and before I return fully to the world I think I'll spend some more time enjoying my plot of earth and my couple of yards of flesh. 

Even the questions that first sundered me from my former plots no longer can be conceivably served by a single answer. 

Am I dying? No, I am not. Yes, of course, I am. 

Will I ever recover? 

Never better. 

Never better.

Our Body, Our Selves (Part 1)

December 3, 2015

When we talk about healthcare, we spend a lot of time talking about individuals—patient's rights, privacy, the doctor-patient relationship. Of course, it is as individuals that we experience our illnesses and our encounters with doctors. But medicine is by its nature a matter of populations. The meaningful relationship to discuss is not doctor and patient but medical professionals and the populations they treat—and the institutions in which they all live and work. No disease is cured by individuals or for an individual. They are cured by teams, often collaborating (and competing) across generations. They are cured for populations, whose odds improve as knowledge of the disease and its cure disseminates across the profession and roots itself in curriculum and practice.

When part of a population is subject to chronic illnesses—physical or mental—the whole population suffers. Yet, because we fool ourselves into thinking of health as an individual affair, this is not how we experience it. That this collective suffering is not recognized is due to the various materials we use to insulate ourselves one from another. These materials include, on one hand, the fantasy that we possess a right to privacy and autonomy, and, on the other, the fantasy that there is meaning to be found in the social categories of race, class, and gender—meaning which often works to deny privacy and autonomy to those whose race or ethnicity or socioeconomic status or gender marks them as other than the "we" that need not speak its name. When "they" suffer from medical problems "we" fool ourselves into imagining their problems are caused by something unique to their lives, their destinies. It has nothing to do with "us."

What follows over the course of intermittent installments under this title will be a series of half-formed meditations on the relationship between illness, individuals, and the social identities in which we continue to be inordinately invested—with disastrous consequences for our collective health. I am no doctor, no public health expert—only an old professor who has spent a very long time as a patient and almost as long thinking about the politics and practices of identity, particularly in the U.S. If all this adds up to something it will be against some long odds; if it fails, it will not be for want of trying.

____________

When my wife was pregnant with our first child, we had to have what the doctor in Iowa somewhat excitedly termed a "Jew Test." Had there been more Jews in central Iowa, he would no doubt have used the more precise name of Ashkenazi Jewish Panel, a series of genetic tests to make sure we weren't both carriers of genetic diseases particularly prevalent among Jews of Eastern European descent, including Tay-Sachs and Gaucher disease. The prevelence of such diseases among European Jews is almost certainly the result of population bottlenecks brought about by the centuries of pogroms and genocide—as well as by a religious mandate towards intramarriage and historic antisemitism that made ethnic intermarriage extremely rare until modern times. Population bottlenecks and endogamy are a recipe for genetic disease to establish themselves in a community.

In the case of the Ashkenazi the conditions leading to predisposition towards certain diseases likely developed over the course of many centuries or millennia. But there is evidence that genetic change has happened much more quickly—in the case of African American descendants of slaves over the course of three centuries. A study published in 2011 suggested that a genetic predisposition for such health problems as hypertension, sclerosis, and prostate and bladder cancers might well be the result of genetic adaption to a radically new environment among the descendants of African slaves.

In both the above cases, genetic predisposition towards certain disease is intimately connected with historic oppression. But one does not have to look to the genome or centuries' old history to find such connections between health and all that artificially divides us. According to the CDC, the percentage of African American babies with low birth weight in 2013 was 13.1%, compared with 6.98% among non-Hispanic whites. The percentage of Latinos under 65 without health insurance is 30%, as compared to under 17% for whites. And the percentage of African Americans living in a neighborhood with at least one grocery store selling fresh fruits and vegetables is 8%, according to a recent State of Obesity Report, as opposed to 31% percent for whites.

These are just a couple of statistics from among a vast army one could muster, of course, but they at least serve as a starting point for demonstrating the ways in which the conditions that lead marginalized and oppressed groups to experience less health and unequal access to healthcare are re-inscribed daily in our present-day moment. Obesity-related diseases such as type 2 diabetes, heart disease and stroke are all more prevalent among those with unequal access to preventative care, and these conditions disproprtionately impact African Americans and Latinos. Living in "food deserts" and "food swamps"—neighborhoods saturated with fast food, convenience stores and predatory marketing—makes it far less likely that healthier, happier outcomes can be achieved by those who are trapped in these communities by the accident of birth and the intentions of those who would rewire accident as destiny.

So it is that race and ethnicity become something akin to genetic destiny as far as the health of our fellow citizens are concerned. And those who do not live in food deserts or swamps, those who have access to good insurance and to attentive doctors (needless to say, we are talking predominantly about middle- and upper-class whites—and especially white men—here) can look at the statistics and shake their heads, perhaps sadly, perhaps contemptuously (or both) and imagine that none of this has anything to do with them.

And so the oppressed grow sicker while the rich grow healthier, imagining all the time that it is some kind of virtue or genetic purity (or both) that preserves them from the epidemics that impact the majority of their fellow citizens. Surrounding themselves in moated communities walled in by Whole Foods, Apple Stores, and yoga studios, we can fool ourselves that bad health—and most especially that related to "lifestyle" (as if those who live in food deserts choose to avoid fresh foods or those who can secure no employment in their communities prefer not to work)—is the stuff of another country, another people, another world.

One does not have to be a compulsive reader of science fiction to know how this story ends. But it helps.

My 21st-Century Social Science

November 18, 2015

I have spent much time over the last year trying to understand why social media so often leaves me despondent. Only very rarely, after all, are there moments when individuals on my feeds "act out" in a way that is personally distressing to me, and I am extremely grateful that I myself have acted badly on these platforms only a few times (I am especially grateful to all my friends of social media for forgiving me my trespasses). For the most part my feeds are overwhelmingly dominated by good and funny people sharing stories of their everyday triumphs and struggles, baby and puppy pictures, news stories about outrageous (and, more rarely, heroic) people and institutions—and (since my feeds are overwhelmingly dominated by creative and talented people) works-in-progress. These are all things I deeply enjoy, shared by people I care about and admire. 

So, why does time on Facebook, Twitter, Tumblr so often leave in its wake shades of sadness—or, more often of late, much darker hues? 

And there is the related question: knowing that this will be my response, why do I keep going back? After all, if the problem lies not in Facebook or Twitter, then surely it lies with me. So if I can't engage with social media without risking depression, why do I not simply walk away, as I would with a relationship or a job that costs much more than it gives back in return?

There have been several recent studies identifying the outlines of a connection between social media and depression, but thus far they have tended to identify the source of the problem in the addictive nature and negative impact of "social comparison"—the daily comparisons of our mixed and muddled everyday lives against the "highlight reels" of others. 

Engaging in my own "self-study," I am convinced my issue lies elsewhere, although I don't yet fully understand it. Facebook was founded in 2004, and I joined in late 2006, shortly after my first extended period of illness and a final surgery that provided a meaningful (if ultimately short-lived) respite. Before I had become sick in late 2004, I had been a very social person, despite a lifelong struggle with moderate social anxiety. People made me nervous, but I craved their company. For a decade my wife and I hosted dinner parties a couple of times a month, and even hosted larger parties on a fairly regular basis. I had lunch dates 2 or 3 times a week with colleagues and friends. I spent hours on the phone with my long-distance friends and family. 

By the time I was recovering from my second surgery in the summer of 2006, all that had begun to change. As I now see it from the distance of almost a decade, the change would prove irrevocable. But in 2006, I was still operating—as I and my doctors would continue to do for much of the next eight years—under a model of acute illness, believing I was afflicted with a malady to be cut out, irradiated, poisoned out of my body. So it was I entered the world of social media for the first time believing the worst was behind me and that this new technology provided the best means to start reconnecting to the world while I recovered my social sea-legs. 

Of course, as I am only beginning to understand now, I was not in the grips of acute illness but chronic, albeit a chronic condition that still had its ebbs and flows, and even, at the time. extended periods of remission. Along the way there would be acute issues that needed to be addressed with the scalpel, furthering my belief (and that of my doctors) that mine was an acute (if oddly resistant to either explanation or cure) series of maladies. 

So it was that after each retreat in the face of illness I returned desperate to rekindle a sense of social connection, and turned with renewed vigor to Facebook. And it worked, sort of, for stretches. But despite its ability to "connect" us one to another, for me at least those connections turn out to be carried on the thinnest, most brittle filaments, tendrils that bind but carry few of the nutrients essential to social life.

I am no technophobe. Quite the opposite. So it has taken me a good decade to accept this reality. I know many who severed those tendrils years ago, and many more for whom social media is genuinely nourishing and who have cultivated beautiful gardens among its brambles. But for me, foolish me, it is a broken field of winter brambles from which I am unwilling to extricate myself. For better and worse, it remains the closest to a "social life" I am likely to achieve any time soon.

Everything I am describing here is no doubt familiar to many living with chronic illness—mental and/or physical. Making plans in meatspace is scary. Leaving aside the parade of medical appointments and regimens, day to day—and sometimes hour to hour—capabilities both emotional and physical can vary wildly. Hosting a dinner party is about the most terrifying prospect imaginable when you might not be functional or presentable the night the party rolls around. One too many canceled dates and friends start pulling away, understandably taking it personal (especially if, as is the case for many of us, the pattern starts long before the diagnosis is in hand to help explain it). One too many dates whiteknuckled against the demands of every fiber in your being into crawl under the covers until the episode passes, and pretty soon the cost of making plans in the real world begins to outweigh the benefits. 

Before you know it, you start calling all the events on your calendar to see even the most loving, forgiving and nourishing of friends commitments—because the minute they are made you can't help but start that most dismal of meditations: "Things are going well now, so the odds are they will be bad by the end of the week? Did I cancel on her last time? Afternoons seem to be rough this week, so maybe I should change it to morning? That bar never has enough seats and there is no way I'll be able to stand more than an hour? What was I thinking? What should I do?"

Of course, for many mental and physical chronic illnesses, stress is seismic trigger, so the result of this chain is a self-fulfilling prophecy (and loneliness and too much time in one's own head is another trigger, and so we return, moths to the flame). Even if brain and body conspire to liberate you from the vortex of anticipatory unraveling, the very act of getting ready to go out is a minefield in itself. For me: klonepin for the now not-so-moderate social anxiety; compression stockings that take 20 minutes to pull on, a process requiring another 20 minutes of recovery; a liter of water to wash down the salt pills; a strategically-timed nap (what if I can't sleep? what if I sleep too long?); where's my "cool" cane? Does this cane make me look old? What do people talk about these days?

Everyone dealing with chronic illness has their own pregame ritual, one that we hide from the world as best we can because we don't want the evening's conversation to be about our illness (insomnia gives us more than enough time thinking about that), because we want the friends we are seeing less and less often to remember us at our "best," because we still want to be "normal."

So it is I continue to make plans I will quite likely cancel, straining already weathered relationships. So it is that from each retreat from Facebook I gingerly return, hoping to suck what marrow I can from those brittle straws. And even when it seems that much of what there is flowing through social media's capillaries is fear, grief, and even hate—as is the case this week—it is still, truly, better than nothing. And I am grateful for it. And for you.

Selling It

September 22, 2015

In opposition to the push for greater and more equal access to health care—which means more affordable health care—lobbyists and conservative commentators have constructed the fantasy that patients are the ones responsible for the high cost of medicine in the U.S. If we became "better consumers" of our health care, they insist, making the same kind of informed economic decisions we make in other aspects of our lives, then price competition will drive down prices. As one health care "think tanker," Merrill Matthews, recently put it in Forbes "liberals ... are convinced that people are too stupid to make good decisions." By his logic, a single-payer health plan is the height of nanny-state condescension, while free market capitalism is an arena where consumers can exercise free choice to make informed decisions about their health care. 

I always bristle when I hear such arguments because they are, necessarily and inevitably, devoid of any concrete examples. What, in our health care system in the U.S., would it mean for consumers to "shop" for the best prices? When my neurologist calls me up and says he wants to order a genetic test to check for a potentially fatal condition, or to arrange a consultation with a colleague who specializes in dysautonomia, do I ask him: "How much is this going to set me back?" Do I shop around for other specialists in my city who work on dysautonomia and compare credentials and costs? 

Of course, there are no other doctors specializing on my condition in my city. But if there were, they would almost certainly not be part of my health plan. In fact, there are some very good specialists up in Cleveland, but my health plan won't cover me visiting them. There are a ton of neurologists over at a neighboring hospital, where they migrated from Ohio State after a dispute over something or another. But I can't see them either, as my insurance company will never pay for it. And paying for such services myself without insurance would certainly not be a wise economic decision by anyone's measure. 

The notion of freedom of choice for consumers in our health care system is of course laughable, even for folks like myself who are fortunate enough to be well insured. Take, for example, a piece in last weekend's Times by a doctor who also himself happens to be a patient suffering from a debilitating chronic disease. Unlike many patients with ulcerative colitis, Dr. Carroll found a treatment that actually worked for him, and an affordable one. Like all patients, however, and despite being himself a part of the medical system, Dr. Carroll experiences himself as "trapped in the system"—forced to constantly go through a complicated and treacherous obstacle course of tests, permissions and prescriptions to get the refills that allow him to function. He cannot choose the pharmacy. He cannot choose the lab where his blood is sent for analysis. He cannot choose the drug company that manufactures the drug. The very notion of "choice" is completely absent from the process at every stage. 

Still, Dr. Carroll's story is ultimately a happy one, despite the considerable tension brought on my the system itself—which for most chronic conditions like ulcerative colitis is an exacerbating factor. He has a medicine that works and one whose potentially dangerous side effects he has not experienced. He will continue to get his medicine refilled, even if only after extensive headaches and delays.

But what of the AIDS or cancer patient struggling with toxoplasmosis? They woke up yesterday to the news that a disgraced former hedge fund manager had set up a drug company, purchased a drug crucial to battling the parasitic disease that predominantly impacts the immune-compromised, and then raised the price to $750 a tablet. This is not a new drug, mind you, and the company is not recouping costs related to R&D. This is a 60-year old drug that just a short time ago sold for $13.50 a tablet. This is a case of greed and opportunism, plain and simple. This is what happens when health care is governed by the caprices of the "free market"—patients who formerly had an effective and affordable treatment for toxoplasmosis will have to now subject themselves to potentially less effective and efficient treatments. People will die; and people will get rich. Only one side of this equation has a "choice."

The Anti-Facters

September 17, 2015

“You take this little beautiful baby, and you pump ... it looks just like it’s meant for a horse," Donald Trump said of vaccines last night. "We’ve had so many instances ... a child went to have the vaccine, got very, very sick, and now is autistic." With two doctors on the stage at the second Republican debate, one might have hoped for a clear response to Trump's third-favorite hobbyhorse (behind his fear of immigrants and his increasingly undisguised loathing of women). But no. Both punted, afraid of contradicting any hysterical belief embraced by one of their voters—no matter how irrational and destructive.

To be fair, one would never expect anything particularly "medical" from Rand Paul, whose campaign could not even properly spell his medical title. He has been on the same bandwagon as Trump for years, and last night he sounded comparatively moderate (only because he really, really hates Trump)—but still managed to suggest that it should be a "freedom" for patients to decide in what combinations and frequency to receive their vaccines. Because apparently "freedom" means the right to ignore both science and society's welfare and make medical decisions based on gut feelings and internet-fueled hysteria.

Ben Carson, however, was the more shocking of the two celebrified Doctors on stage last night. After at first doing what doctors are supposed to do (citing scientific studies and actual evidence), he promptly changed course and started yammering on about how maybe we were giving too many and vaccinating against diseases that are not fatal. While we do indeed vaccinate against some diseases that are no longer fatal, their glorious lack of fatality is because of vaccines. Here I bite my lip and try not to conclude the sentence with "you complete morons!"—because I am nothing if not decorous and restrained. 

But in truth, Carson is not a moron, which makes his continued yammering on the topic deeply cynical and manipulative. “It has not been adequately revealed to the public what’s actually going on,” Carson said. By vaguely and dangerously suggesting a conspiracy—which he knows about but apparently cannot share with the public or the medical mafia will kill his family—Carson effectively signed on to Trump's crusade against modern medicine and scientific research. 

As I have said before, the vast majority of us who are chronically ill are so because of modern medicine—not because of a conspiracy or a failure on medicine's part but because of its phenomenal successes. We have survived all that carried off our immune-compromised and badly-wired ancestors so that we can become, for better and worse, the vast and growing army of the chronically ill. And surely that is a whole lot better than it is worse. 

Which is why I reserve for anti-vaxers levels of disgust I normally reserve for racists and misogynists. Herd immunity, people. It works if you work it. If you choose not to, then please leave the herd immediately. No one wants to be anywhere near you or your children. (Oh, and the reason they are struggling at school probably has more to do with genetics than anything else: after all, their parents don't believe in vaccines.)

Other Voices, Other Rooms

September 11, 2015

I always imagined that it was my lifetime of poor health that left me so alienated from my body, living instead fully in my anxious and loquacious mind. But now, in the midst of my most profound period illness, I find I have taken on a new intimacy with my body. 

There is something strangely beautiful about the body unraveling, something that brings the invisible warp and woof of our most microscopic fibers and the pistons and gears of our very cellular functions into a kind of brilliant relief— tactile and electric. At night, as strange currents run through my arms and legs, I feel as if I have been granted a kind of x-ray vision through which images of the inner workings of my veins and nerves appear one after another behind my closed eyelids. As they misfire and short-circuit, my nerves light up my darkest recesses—here a kidney, there a spleen—and seem to grant insight into biochemical processes no scientist had yet envisioned.

Yet even as my body seems to turn itself inside-out before my mind's eye, my mind itself has suddenly gone dark. It is as if, after a half-century of constant dialogue with the frenetic commands of a mind informing me in tedious detail about the intricacies of every thought, every anxiety, every fear and fantasy, a switch has been thrown by which all my currents suddenly flow in the opposite direction—lighting up circuits I had never before contemplated and snuffing out those which had occupied my every waking and sleeping moment for decades. 

So sudden and complete is the effect that I now find myself doubting that I ever indeed suffered through all those years of anxious interior monologues. The sound of my mind's voice has receded so completely that I have difficulty summoning its memory. What little I remember from the reams of mental commentary which I had been forced for my entire life to read, memorize and repeat—like a nineteenth-century schoolboy—seems now profoundly insipid and pointless.

But what my body has to say... well, it doesn't "say" anything. It communicates in flashes of sensation—needles and flushes, electric currents and luminous tracers across the eyes. It is a sensory laser show, one that even at its most painful and crippling is fascinating and even dazzling in the patterns it draws across my flesh and the chords it thrums across my nerves. But it is mute. Blissfully, painfully silent, requiring me to sit—for once, at last—silent in return, observing and wondering like a newborn babe seeing her mother's face for the very first time.

Tag, I'm It

September 2, 2015

Today I picked up my first disability placard from the BMV. Like starting physical therapy a month ago, doing so required acts of both will and resignation I had not anticipated.

As with so much involving state bureaucracy, acquiring the disability permit was far from direct. Standing in line at the BMV yesterday, my recently-filled prescription and paperwork in hand, I found myself surprised by an overwhelming sense of sadness and loss. My mounting grief was quickly tamped down by refocusing my attention on my surroundings. "There is no crying at the BMV," I imagined the bearded manager, who seemed to be eyeing me with growing suspicion, barking over the counter.

It is true. There is no crying at the BMV, but I came close once again when I made it to the counter only to discover that my doctor had made a small but crucial error in writing the prescription. So it was back to the doctor's office, and back again to the BMV the next day. But in the end, it was done. I was officially a "D."

On campus there are categories of parking permits: "A" for faculty; "B" for staff; "C" for students... and "D." It is hard not to feel demoted, even as I now have access to spots I once coveted hungrily while dragging my bags of books from the garage to the office. But with the elevator out at my garage for the foreseeable future, it was a necessity I could no longer avoid. And like the physical therapy I long resisted—because I didn't want to be like "those people who need physical therapy"—I suspect I will learn to embrace my new tag even as it represents at the moment everything I most fear embracing about my new life.

In and Out of Bed with Marcel Proust

August 28, 2015

Although it is anathema in our 24-hour workaholic culture, I truly understand why people might "take to bed," as the Victorians put it, and declare themselves "invalid." When one is interminably ill, having ambitions of any kind seems an exercise in disappointment and self-loathing—and all exertion is inevitably an exercise in self-flagellation. It ultimately comes down to weighing, every day, whether pain and disappointment is preferable to taking permanently to bed. Making the choice harder still is the image in our mind of the patron saint of all invalids, Marcel Proust, who took to bed for the last three years of his life, from which position he finished À la recherche du temps perdu. I picture him in his nightcap and gown, hunched over writing feverishly, a gleam in his eye that glows all the brighter for the pallor of his wasted visage. The only sound is the scratch of his pen as his all-but indecipherable hand fills up yet another page of the manuscript grown around him like a ponderous, perilous forest. 

This was the image I had in mind for many years as I imagined bedrest and confinement as an anodyne to the anxiety and froth of everyday life—one which did not dull the mind or ambition but fueled new insights and understandings. Indeed, had I not had a chance to put my vision to the test a decade ago during an earlier, shorter period of illness, I suspect I would be in bed at this moment, laptop alight on my chest, books piled high around me... while I slept fitfully but profoundly oblivious to the potential charms of ideas and art strewn about me.

And as attractive as may be the images in the mind's eye of Proust life in bed, there is also that other image, of the writer on his death bed—the same bed in which he completed his masterpiece. A lifelong sufferer from chronic respiratory illness, he was died at 51 of pneumonia—the result of insufficient knowledge of and treatment for his asthma and bronchitis, but also, more directly, the direct result of three years of bed rest. Today we know that bed rest—once the most common prescription for a wide range of ailments and for recovery from almost any medical procedure—very often does more harm than good. Kidney failure, pulmonary embolisms, and of course pneumonia are at the top of the various health risks directly associated with what was until fairly recently one of medicine's most prescribed treatments. Of course, Proust would not have known that. At the time, invalids taking to bed for months or even years was common, even in his own family, as he writes about so beautifully (and humorously). But if we rightly admire what Proust accomplished from bed in his final years, it is also hard not to wonder how much longer he might have lived—and how much more he might have written.

So it is that now I keep in mind not the romantic image of Proust writing in bed, but this deathbed photograph—the most boring picture Man Ray ever took. Jean Cocteau summoned Ray, who was still settling into his new life in Paris, to take the picture. Confronted with the body of one of the age's most daring and innovating writers, Ray became uncharacteristically dreary and conservative, producing a portrait that swerved not an inch from the model established by countless deathbed photographs taken since the middle of the nineteenth century. This is the image that gets me out of bed each morning.

August 13, 2015

The history of the comics form’s evolution is hard-wired to the non-novelistic narrative of chronic illness, mental and physical, genetic and environmental. Krazy Kat is as good example as one could hope to find: for over thirty years George Herriman told the story of a mouse who was compelled to throw bricks at a kat, a kat who translated the pain of those blows into love letters—a sado-masochistic relationship made more overwrought by the addition of Offica Pup, whose love made him wish to protect Krazy from the very bricks Krazy most desired—as well as a menagerie of other citizens of the magical southwestern landscape of Coconino County each driven by their own demons in ways that warp and woof together create something akin to a comics version of a beautiful Navajo rug.

Or we might take the first successful daily strip, Bud Fisher’s A. Mutt (soon to be Mutt & Jeff), which told the story of a gambling addict determined each day that his next bet would be his big score—a strip that turned San Francisco into a city of daily comic strip junkies by basing each of Mutt’s bets on actual horse races whose outcomes—almost always horrible—would be revealed in the following day’s paper. 

From this breezy tour through early comics history we might notice a few common features. On one hand, we see repetitive injury, compulsion, and the complete lack of forward movement—and in fact an entirely new open-ended seriality that did not exist before. Krazy Kat or Happy Hooligan at the end of their 30+ years are still engaged in the same patterns as they were at the beginning. This is not what we would necessarily call the easy shortcut to comedy success—it is precisely not a shortcut to anything. It is humor that works deliberately against the grain of its often bleak subject matter—the imprisoning structure of pain and compulsion that locks in our characters to seemingly inescapable patterns and unnarratable stories. 

But of course, on that other hand, we have the strange alchemy of these comic strips by which the repetitive and often crushing weight of daily pain is transformed into beauty, love and magic. These are not stories of triumph over pain or escape from its prisonhouse. These are not narratives to be mapped out via novelistic or three-act screenplay structure. They are stories that take a lifetime to read, measured out in weekly and daily installments in which on one level nothing ever changes while at the same time everything is made wholly new precisely because of the combination of time, serial repetition, and the active collaboration of readers intrinsic to the comic form—and vital to the sharing of illness narratives. Born in the later 19th century alongside modern medicine, comics emerged as the narrative form of the chronic as opposed to acute illness, a form we now need more than ever as chronic illness now impacts the lives of upwards of half of the adult population in this country.

There were rare moments in early comics history when acute illness was the story, most famously in the infamous 1929 continuity in Sidney Smith’s The Gumps in which over the course of many daily installments the beloved character Mary Gold wasted away on her sickbed from an unnamed illness while Smith’s legion of fans wrote in begging him to spare her life. And they had every reason to believe he would listen: after all, he had so many times in the past. In May 1929, however, death came to the comics for the first time striking down a major character and sending millions of comics fans into the paroxysms of despair. 

But such encounters with acute illness and death were the exceptions, and the Gumps' 42-year run, while punctuated with moments of high melodrama, was primarily dedicated to the repetitious struggles of everyday domestic life. Still it was an exception that would increasingly become more familiar heading into the 1930s, as newspaper comics began to aspire to more cinematic storytelling, visually as well as narratively. By the end of the 1930s, of course, a new comics medium would emerge from these experiments with adventure and science fiction comics—the comic book where in 1938 the modern superhero would be born. Superman was famously the creation of two children of immigrants who surely took great pleasure in the fantasy of an immigrant whose ancestors, like their own, had Hebraic names, but who, unlike themselves, could put the world’s bullies in their place, leap tall buildings, and of course laugh off the doctor’s feeble hypodermic.

But in so many ways Superman was and remains an exception among superheroes. Beginning with Batman the following year, we see what would later become the more familiar pattern, of a superhero finding his or her power in disability and chronic illness. For Batman of course it is the trauma of witnessing his parents’ murder, an event which would replay in his mind and in the pages of his comic books for decades to come. But at the time it was the Superman model that was dominant, and less than a decade after first being introduced, the superhero boom was over—well and truly so by 1947, when a range of new genres exploded on the newsstands: romance, crime and horror among the most popular and ultimately the most controversial as the relationship between readers and their comic books continued to grow more intense, intimate. 

For many cultural gatekeepers and midcentury paranoids, these comics were a new agent of disease—and only in part because of their content. What really freaked out the most attentive of those sounding the alarm about the dangers of comics was their seemingly unaccountable addictive nature. Young readers collected, saved, and reread their comics, losing themselves between the panels and in the third meanings that emerge from the tension between word and image. To those of us who study comics, these practices make perfect sense: it is how comics work, summoning the reader to active engagement and collaboration. But as Carol Tilley discussed last year, for Dr. Wertham and many others, it was terrifying—something to be monitored—better yet, censored.

And so it was, with the Comics Code of 1954 (the same year the polio vaccine was introduced). But we here have very good reasons to be grateful for this misguided act of quarantine. For one thing, the banning of horror and crime comics lead to the rebirth of superhero comics, most famously at Marvel in the early 1960s, where disability and chronic illness became foundational to not only the origin stories of superheroes but their ongoing narratives, as Jose Alaniz describes in detail in his recent Death, Disability and the Superhero. As a sickly kid in the 60s and 70s I used to hang out on the streets of Brooklyn hoping to get run over by a truck loaded down with radioactive material (which comics told me were pretty much ubiquitous). I was far from alone in such fantasies: these superheroes made our duck-and-cover drills less terrifying, true, but they also made us think differently about the chronic illnesses that were for many kids like myself a part of daily life in the inner-city in the early 70s—especially asthma, only recently recognized at the time as an inflammatory disease and not a psychosomatic condition. Heck the X-Men and Iron Man even made genetic defects and the iron lung look sexy.

Meanwhile, in San Francisco, a particularly virulent strain was emerging from underground—dedicated to exposing the chronic miseries of normative life and exploring the possibilities of opened up by dropping out and dropping acid. By the early 70s, however, this particular assault on Normal was looking less radical than it first appeared, especially to cartoonists who found themselves excluded from the white male comix jam sessions and increasingly weary of seeing female and African American bodies used as props for white male fantasies. Out of this frustration, both Tits & Clits (co-founded by Joyce Farmer, who is with us this weekend) and the Wimmen’s Comix collective were born in 1972, shifting the focus from acid trips and rape fantasies to women’s lives, bodies and health issues. It was here at Aline Kominsky would publish her earliest autobiographical Goldie stories in 1972, and it was here that our own Carol Tyler would publish some of her own early autobiographical comics in the 1980s.

Others had grown weary of the dominant world-view of underground comix as well. Justin Green famously stands at the headwaters of the autobiographical comics tradition the river in which we graphic medicine folks do most of our fishing, and in 1972 he turned his personal struggle with obsessive compulsive disorder into Binky Brown Meets the Holy Virgin Mary, a story not about conquest or cure, but about testimony and perseverance. As Green’s trussed-up narrator puts it in the opening page: 

Many others are slaves to their neuroses. Maybe if they read about one neurotic’s dilemma in easy-to-understand comic-book format these tormented folks will no longer see themselves as mere food-tubes living in isolation. If all we neurotics were tied together we would entwine the globe many times over in a vast chain of common suffering. 

The first American long-form autobiographical comic is a work graphic medicine, and specifically about a chronic condition, in which happy endings and cures are not at hand and triumph is found in the act of sharing and entwining with others, and in the magical translations only comics can perform.

We are gathered here to celebrate and learn from the tradition that was inspired from Justin Green’s pioneering work, but it is a tradition that has its origins, as I hope I have shown, deep in the genome of American comics—a strange symbiotic connection between sequential graphic narrative and the decidedly non-Hollywood stories of the modern illnesses that have emerged front and center as modern medicine has corralled so many of the plagues and epidemics that long notched the tree of human history. And it makes good historical sense in terms of the understanding of chronic illness as simultaneously a profoundly individuated story and one requiring, as Green put it in 1972, the entwinements of shared stories, that graphic autobiography has emerged as such a crucial tool in conveying these stories.

What follows is too numerous, to thick to recount in detail. Shortly after he first saw Green’s pages for Binky Brown, Art Spiegelman began working in autobiographical comics and on Maus—a story of depression and the multi-generational impact of both the global historical trauma of the Holocaust and the deeply personal trauma of a mother’s suicide. In the late 80s, Al Davison began publishing his story of growing up with spina bifida in his graphic memoir The Spiral Cage, while the 1990s brought us Harvey Pekar and Joyce Brabner’s Our Cancer Year. And by the turn of the 21st century, it was as if a cork had come off the bottle: graphic medicine memoirs were suddenly everywhere, a great many of them addressing chronic illnesses and disabilities, ranging from depression, bipolar disorder, OCD to herpes, Crohn’s, lupus and anorexia. And we are just getting started.

Beth Hewitt will be talking on Saturday about a couple of recent graphic narratives about chronic illness, Julia Wertz’s Infinite Wait and Jeffrey Brown’s Funny Misshapen Body, so I will leave those gems to her. I want to end by turning briefly to a recently self-published narrative about living with IBS, or irritable bowel syndrome, one of a number of chronic illnesses that add insult to injury in their acts of naming—as if the primary condition of IBS was irritability or the overwhelming concern of CFS was fatigue. These names, like the metaphors Sontag decries, impact the way in which diseases are perceived and treated—not to mention gendered. And a narrative like Joy Spencer’s brave and uncompromising Chronically Me is a bold refusal of such attempts to write off her decades of pain, suffering and shame as “irritability.”

Like the comic strips of a century earlier, Spencer’s Chronically Me is not about triumphing over adversity—and all attempts to defeat IBS over the course of decades prove as futile as Happy Hooligan’s attempts to do the right thing. Following in the spirit of Miriam Engelberg’s Cancer Made Me a Shallower Person, Spencer ultimately rejects the promise of deeper meaning and cosmic structure. But where Engelberg’s book ultimately ended when the course of her cancer made it so that it could not go any further, Spencer’s story continues—and almost 30 years since the onset of her disease, despite countless interventions from modern and alternative medicine, precisely nothing has changed at book’s end. She offers no promise of release or relief, only the promise that is graphic memoir—that in telling your story, even a story that goes nowhere, there is fellowship, entwining. As Spencer puts it here, the book serves for her as a connection to “other sufferers” so they “will know they are not alone.” 

This is the balance of graphic illness testimony: the balance of reaching out with our stories not so that someone else sees their story told by another. Chronic illness, after all, is like a really painful, sucky snowflake: each one is profoundly unique—which is but one of the reasons of why it confounds evidence-based modern medicine. No, we reach out through this form so that we can hear another’s story and fill in our own as comics invariably commands us to do—so that we don’t isolate in our own “feedtube,” as Green put it in 1972, but lock arm in arm, cane in chair, and entwine the globe in our stories so that we can find finally the balance to move forward into the 21st century together.