Mental illness and the Body of Christ

I spent the other day at the cathedral church for my diocese, going through the required training program to become a Eucharistic Visitor. (A Eucharistic Visitor—EV—is someone who brings fellowship and the Eucharist to members of the congregation who can’t make it to church for some reason.) It was…interesting. Some of it was new; some of it was useful; some of it was infuriating. For the most part, I felt a real camaraderie develop among the 16 or so of us trainees, who came from several different area churches. As the day progressed, I was impressed by the strength of faith, theology, empathy, and openness of my fellow trainees.

A large chunk of the training involved witnessing and performing role-played scenarios of the types of visits we might encounter. We were handed slips of paper with a brief description of the visitee’s age, situation in life, and temperament: Man, 79, is recovering from knee replacement surgery at home and is in generally good spirits but lonely and desirous of company. 66-year-old woman is dying of cancer in a hospital bed and has trouble speaking or swallowing. 89-year-old woman has recently moved to an assisted care facility; she is gregarious and invites several friends to participate in communion with her. We split into pairs and took turns playing the visitor and the visited; afterward we’d gather as a group to reflect on our encounters. Emphasis was placed on developing our empathy, both through practicing active listening and through creatively imagining ourselves into the situations we were given.

Great. Good. Until one pair of trainees turned out to have had a scenario involving a 21-year-old woman who was in a psychiatric ward for suicidality. And then—and I’m not sure exactly how to describe this—the atmosphere changed palpably. There was a discussion, punctuated by furrowed brows and wise nods, of how hard and unusual and strange this situation was, how difficult to reach the woman being visited, how glad everyone else was that they hadn’t drawn that slip of paper that would require them to pretend to be a young woman in a psych ward. Perhaps the most concrete example of what I mean is that one of the training leaders said, “Well, I just can’t imagine being 21 years old.”* Someone else immediately chimed in, “Let alone being suicidal!” It felt as though the discussion had abruptly shifted from exploring how to put ourselves imaginatively into someone else’s shoes to a relieved consensus that such empathy was obviously impossible.

This description is far more nuanced than I could have given at the time. In the moment, all I was aware of was the shock of going from feeling warm, welcomed, and safe to the opposite extremes. I could feel myself shaking with anger and struggling not to cry. I excused myself to the bathroom for a few minutes. I glared at my reflection in the mirror, balled and unballed my fists, wiped my eyes, took a breath, and went back out. The conversation had moved on, and no one had noticed that anything was wrong. Our day ended shortly thereafter.

What was wrong, exactly? I’ve spent some time pondering the situation, and here’s what I’ve come up with. We had been invited—directed—to put ourselves into the situations of the people we might be called upon to visit. The leaders reminded us repeatedly that one of the purposes of the exercise was to imagine what it was like for our visitees. But no one wanted to play the young woman in the psych ward. No one wanted to imagine what her life—my life—has been. And instead of acknowledging this reluctance as coming from discomfort, they said, “oh, it’s obviously too hard. It’s impossible, really.” And all these lovely, empathetic, warm, thoughtful people pushed me away, without even realizing that they were doing it.

You know what? I can imagine what it might be like to be 89 and in an assisted living facility. To feel your body change and start to fail you, and to worry that your mind will do the same. To feel that others are beginning to see you as irrelevant, while you know that you have more to offer than ever. To lose the dignity of autonomy. I can imagine what it might be like to live with chronic physical pain, or to lose one’s spouse of many years to death or divorce. I’m sure that what I imagine is different from individual reality; and I don’t think that putting myself into someone else’s shoes gives me any kind of ownership over their situation. But I try to imagine these things, and (even if I don’t always succeed in this) I try to listen to the narratives I hear from others for whom these things are a reality. So why did it feel as though these people were unwilling to do the same for me? Why, when we talk about mental illness in community,** is it always “them,” never “us”?

A suggestion: people are scared. This seems reasonable to me. We don’t want to think about bad things happening to us; we don’t know how we’ll deal with changes that shatter our world. We do nonetheless share a cultural understanding that we might get cancer, however shocking it inevitably is when it happens. We know that our best-case scenario involves growing old and the hardships that come with that. We know that all marriages end, whether by death or divorce. (See [please!] Louis C. K. on the matter.) But it’s terrifying to imagine that the sadness and despair that we all experience at some point could balloon, could devour our lives until we actively seek death. We don’t want that to be part of the human experience. We don’t want to be able to empathize with this. Perhaps on some level we’re afraid that, if we put ourselves into a suicidal person’s shoes, we’ll never be able to take them off.

I have been there, and I understand it. I find that even among the narratives of those who have been hospitalized for depression, there’s a curious desire to distinguish between the ones who are “really” crazy and the ones who just, you know, happen to be there. Between them and us. But there is no them; there’s only us.

Afterward, I wondered why this small incident of alienation had stung so much. It’s not as though something similar doesn’t happen pretty much every time mental illness comes up in pretty much any group I happen to be in. It’s not as though this was in any way unique or drastic in the annals of people alienating one another. What I kept thinking of was 1 Corinthians 12:21: “The eye cannot say to the hand, ‘I have no need of you,’ nor the head to the feet, ‘I have no need of you.'” This was a Christian context, and I had felt safe as a member of the Body of Christ. Until I didn’t.

*I should note that I appeared to be the youngest person in the room by perhaps 15-20 years.

**”In community” is important. One-on-one, I’ve found people to be remarkably sympathetic and usually eager to share stories of their own encounters with mental illness, either personally or in someone close to them. When I tell one person about my hospitalizations, I actually often have the opposite problem (though I suspect it comes from the same emotional place): they want to assure me that they know exactly how I feel, and they often have trouble listening to me because they’re filling the space with their own stories of depression. This bugs me, but I’ve certainly done precisely the same thing to other people more than I’d care to admit.

Maybe “tumor” is the term?

What do you call a post that starts out as a comment on another blog, probably doesn’t make sense without the original post, but is also so long that you feel weird about basically hijacking someone else’s topic?

Anyway, that’s what happened. E Lawrence wrote a thoughtful article over at WIT entitled “Do we care about mental illness?” and then I basically replied with a novel.

Here is what I said, expanded (depressingly little) and with links cleaned up:

I have a LOT of thoughts about this topic. Thanks for this post! It opens up some exciting (wc? whatever) areas for discussion.

1) I appreciate and agree with your calling out the “we” versus “them” language when it comes to mental illness. I have many friends and family members in the academy. I have many friends and family members in the church. Put simply, most of us deal with mental illness. It is “we”; it is not “them.” When I tell friends about my depression, I’ve learned to expect the, “Um, yeah, me, too” reaction, because that’s almost always the reaction I get.

2) “I believe that we in the academy are perhaps in a position to evaluate mental illness with a social, structural lens in place, especially because these issues affect society as a whole beyond the academy.”

You gesture toward the falseness of claiming any “objective” viewpoint later, but I think you could and should go much, much farther. In my experience and those of my nearest and dearest, the academy is itself deeply sick. If we want to call attention to the social, structural aspects of mental illness, what exactly do we call the phenomenon of the prelim? What do we call adjunct positions? What do we call the tenure review? Within psych research, how would you classify Diederik Stapel? To put it harshly (perhaps too harshly), I think the academy is far too busy fostering and exploiting mental illness to be in any position to evaluate its social and structural aspects.

3) And if you made it past that rant, here’s some embarrassing self-disclosure. I was struck by the repeated phrases “contemporary psychological approaches to the human person” and “psychological insight into the human person.” I’ve dealt with debilitating depression for literally as long as I can remember, but only in the last year have I had to deal with feeling as though I had lost myself. I cycled through more than a dozen psychoactive drugs, some of which affected my personality (as described by a previous commenter); I left a job (academia) that had given my life meaning; and I underwent ECT, which led to extensive memory loss.

Here is an example. During or slightly before the ECT, I heard a beautiful and moving sermon about suffering and the incarnation. It helped me to crystallize my thoughts about God’s role in my own unbearable suffering, and to feel, for the first time ever, that I could accept the incarnation into my personal theology. Through Jesus, I came to believe, God does not take away my burden of pain. I mean, I knew that God doesn’t take the pain away, because the pain was still there. It was a fact. I had, and have, no use for the “all the suffering will be worth it in heaven” line. Even when I get well, the pain will still have been real, and it will never have been worth it. So God doesn’t take it away; but God, in Jesus, might perhaps choose to share it with me, fully. And that’s something.

This is approximately what I thought. Then, two months later, it was gone completely, vanished with so much else from my memory. Four months after that, I came across a description of the sermon while re-reading my journal (looking for precisely such lost things), and I reconstructed it as best I could. But, dude, this was a pretty big idea, pretty central to my spirituality and my construction of myself. My relationship with God, my prayer life, was really really different before the ECT vs. after.

I would describe myself as a well-read amateur in theology, so I have no idea what work might be out there on the malleability of self in the face of trauma. But in the past few months, all talk of “the soul” has left me cold, empty, slightly contemptuous. The model of personhood taught within mainstream Christianity is no longer adequate for me.

4) Perhaps “exciting” is the right word choice, after all. When I think about all these questions right now, there is sadness, anger, confusion, hope; but there’s also that spark of excitement, the catch of the breath that I rely on to tell me: this is a problem worth working on. This is something that could be really, really cool. Theologians, I think, should concern themselves with psychology and with contemporary models and experiences of mental illness, but not (just) because it would be the useful or the compassionate thing to do. You should work on this because it would be awesome. Because it would be interesting. Because it would open up new ways of thinking about people and about God and about people with God. And if awesome, interesting, novel ideas don’t beat back the darkness, then I don’t know what will.

I don’t remember.

(TW: Descriptions of depression, suicidality, and ECT.)

The first thing to know is that I left my Ph.D. program. By last December, I’d been hospitalized for depression and suicidality three times. I was on a medical leave of absence, but I wasn’t getting better. It wasn’t clear whether or when I would improve enough to go back, but it was pretty clear that grad school made my symptoms worse. So I left. It was a devastating decision, though I think it was the right one.

In January I was hospitalized for a fourth time, for the by-now usual reason—I couldn’t be trusted not to try to kill myself. This brings me to the main thing I want to talk about right now: on the recommendation of my treatment team, I underwent a course of electroconvulsive therapy, or ECT. Much of the forthcoming description is based on conversations with my husband, therapist, and friends.The doctors who talked to me about the treatment and the informative booklet they gave me told me that “short-term memory loss” was the most common side effect. In other words, it would be more difficult for me to make new memories while I was doing ECT. More severe memory loss was, the booklet told me, infrequent. (Try this or this for a description of modern ECT. It’s pretty different from the days of Sylvia Plath.)

I have a few memories of the ECT itself. I remember the nurse, the anesthesiologist, and the ECT psychiatrist standing in a small room, mostly taken up by the wheeled bed I lay on. The anesthesiologist—a heavy-set middle-aged woman with dark curly hair—would say, I think, “You’re going to go to sleep now,” and the nurse, standing on the other side of the bed, would tell me, “I’ll see you when you wake up.” I remember the experience of succumbing to the anesthesia: the pull of exhaustion (when I would dutifully tell the nurse, “I’m getting sleepy”), an infinitesimal moment of panic where my brain would yell, stay awake! Don’t lose control!, and then the delicious sensation of relaxing into the darkness: It’s over now. I don’t have to worry any more. Sometimes I would dream. Then struggling up into the world again, being reminded where I was, drinking juice or tea or ginger ale in a waiting room with the other recovering patients for a monitoring period. If I was an inpatient, an MHS (Mental Health Specialist) from the Short-Term Unit would come down with a wheelchair to bring me back up to my room. Otherwise, eventually they’d call my name, and my husband would come take me home.

That’s about it. I remember hardly anything of the six-week period during which I was having ECT. I know Carmen came to visit me because my husband has told me that she did, but even when he describes the visit (it snowed a lot; we had coffee with a friend from our master’s program), it doesn’t evoke any internal recognition. I don’t remember the books I read or the things I did. I stopped writing in my journal. I had nothing to say.

They tell me that I was pretty happy during much of this period. I didn’t seem to want to kill myself any more. I didn’t seem to want anything any more. My doctors were pleased with my progress. They sent me home from the hospital, serene; and six days later I was bad enough to be readmitted. I seemed to be doing fine in the hospital, but I didn’t stay fine at home. The ECT seemed to be working, but it wasn’t working well enough (In retrospect, I think the inpatient environment was helping more than the treatments.). The ECT team decided to up the dose a bit, from “unilateral ultrabrief pulse” to “unilateral brief pulse,” in the hope that a higher voltage, a larger or longer seizure, would solidify the effects. They were optimistic and reassuring.

Allie Brosh of Hyperbole and a Half recently published an account of her own depression. It’s funnier than I can possibly describe, and hits hard and truly. Her description of her symptoms is different than mine: she describes an overwhelming, vacuous apathy, the inability to feel anything or care about anything, a calm deadness that cut her off from everyone she knew. What struck me was that that’s pretty close to how I felt, not during the depression, but during the ECT—or, more accurately, how I didn’t feel. Everything was muffled. I would go to therapy and just sit, saying nothing, for ten minutes at a time. It wasn’t that I was keeping quiet; my head was simply empty. I had to be reminded to eat. My daily planner—usually full of scrawled and crossed-out appointment times and things to do—is virtually blank for these six weeks.

The worst, according to my husband, was the week when I had three treatments, on Tuesday, Thursday, and Friday. When the weekend rolled around, I was unable to carry on a conversation—by the time I came to the end of my sentence I would have forgotten what we were talking about. This didn’t seem to frustrate me. I would start to reply to a question, stop to think, and then trail off into silence and resume my usual activity of sitting quietly in an armchair. I could neither describe the book I was reading nor remember the main characters’ names, let alone summon up an opinion on it. My husband tried to engage me in making scones, but I couldn’t figure out how to follow the recipe. Though I could still read, I couldn’t remember what I read for long enough to carry out the recipe’s directions. As my husband put it, “You weren’t even a zombie. At least zombies want to eat something.”

Throughout all this, I was pliable, compliant. The ECT doctors and nurses were kind to me, and they didn’t seem concerned about the disappearance of my personality. They said I was doing just fine. All my usual suspicion of expert opinion, my native trust in my own experience, my natural cussedness, was gone or muffled or hidden away somewhere. As I was reminded at every turn, I was at the best psychiatric hospital in the country, maybe the best in the world. I was extraordinarily lucky to be here. They knew what they were doing. Nonetheless, gradually, through the fog, I began to listen to the voices—both internal and from the people who knew me—telling me that something was not right, that this was not what I signed up for. I was coming to the end of the course of treatments anyway—usually patients undergo around 12 treatments, and I was up to 15 or 17—and so, eventually, I stopped. I left a phone message saying that I thought the ECT was hurting more than it was helping and that I wouldn’t be making my upcoming appointment, and that was that. That was the end.

It wasn’t the end, of course. From where I stand now, it was only the beginning. I don’t remember those six weeks of being vacant and withdrawn, but I do remember coming back to myself and discovering that large chunks of me were missing. The discovery was gradual—who can remember what she doesn’t remember, after all? First there was the reawakening, the week or two during which every day I felt more alive, more myself. It was like coming home after a long trip and turning the lights on in one familiar room after another. I started applying for jobs again, and answering my phone and email. As I came back, I began to notice gaps. Someone would refer to a visit made or a joke told or a dinner eaten, and I would say, “I don’t remember that.” The things that had been lost expanded in scope: the visits with family last Christmas, books read over the last several years, a friend’s pregnancy. I didn’t remember working at Starbucks for two months in the fall, my husband’s best friends from his graduate program (who have become dear friends to me, as well), the crisis plans and other strategies we’d come up with to fight the depression. I couldn’t recall how many times I’d been hospitalized because I was suicidal, or when, or where. I didn’t remember reading and becoming annoyingly obsessed with Infinite Jest over a period of several weeks. I didn’t remember the therapist I had seen for over a year through my school. I didn’t remember taking an Inquirer’s Class at my church. I didn’t remember this blog.

Some of these things more or less returned to me once I was reminded of them. Some of them didn’t.

Eventually, quite recently, I realized that most of the time I spent in my Ph.D. program is just…gone. I’m sure that if I went back through my notes I’d get back some inkling of the classes I took, the papers I wrote, the people I knew, the part-time jobs I took on. I might even remember the steps that led to my withdrawal from the program. Given how fiercely I’ve loved this career, how much of myself I’ve put into being a scholar, and how many sacrifices I made for it in the past (hello, long-distance marriage! Hello, crushing student loans!), I suppose my reasons were good. I expect that, like many of my choices in the last two years, it boiled down to “I have to leave school because otherwise I might die, and people don’t seem to be okay with that.” But to be honest, I don’t remember.

I’ve always been forgetful. It took me years to make checking for phone, wallet, and keys part of my routine before I left the house. I forget people’s birthdays, holidays, library due dates. Somehow I thought “short-term memory loss” would just be more of the same. It wasn’t, in ways that I was totally unprepared for. In losing my memory, I lost myself. Who I was—who I am—feels discontinuous, sketchy, tentative. I rely on other people to remind me. Many days, I feel like a ghost.

Perhaps the most unsettling part was forgetting where my belongings came from. I hadn’t even noticed the constant internal narrative of recognition until it was gone. Maybe I should wear that red wrap dress that my sister got me that looks really good on me; it would work with the brown boots from Target. I’ll make a pot of tea in the blue teapot Carmen gave me. These are napkins I sewed from cloth that I bought on sale at Gather Here. The sweaters, the can opener and cheese grater, the knicknacks, the earrings, the mugs, the scissors—they looked familiar, but there was no history to them. They, like myself, had apparently materialized from thin air. I wondered if I was even the same person who had bought these jeans, made these napkins, picked out these earrings. It felt more like I was a vaguely unsuitable replacement. I drank Earl Grey from the same hand-thrown blue pottery mug and wore the same size 10 turquoise flats, but they didn’t belong to me in the same way as they did to that other Mary, that Mary who used to know where they came from and how they came to be in her hands.

I’ve taken to asking my husband endless questions to fill in gaps and verify what I think I remember. Where did we get this red dutch oven? What about the silverware? Do you remember when I got these jeans? What did we do when Penelope visited? Did we visit Brian and Lori in New York? Sometimes his answers prod open unnoticed doors, and I remember what Brian and Lori’s house looked like, or the name of their dog. Sometimes, particularly for events from the period of the ECT itself, there is nothing. I learn his answers like I’m in a history class, imagine what it must have been like to live the life he’s telling me of. So gradually, between the things that are coming back and the things I have to let go of, I’m reconstructing my life. I’m rebuilding.

Ernest Hemingway had ECT, I found out recently. He wrote to his biographer, “It was a brilliant cure, but we lost the patient.” When I tried to describe to my psychiatrist what ECT had done to me, she said, “Well, it sounds as though you found something worse than being suicidal.” Which sounds about right.

Am I angry? Some days I am so filled with rage about all this that I can barely contain it. Today I’m less angry. On the one hand, the treatment that was supposed to help me ended up hurting me profoundly instead. (Incidentally, the main symptom ECT was supposed to deal with—the suicidality—came right back after I stopped.) On the other hand, the psychiatrists and nurses were very clearly trying to help, and they very clearly believed that ECT was something that helped people. I met a lot of people at McLean who were doing ECT, and (so far as I remember) they were uniformly enthusiastic and positive about it. They thought it was helping them. The fact that they also tended to be docile, placid, without discernible will, might have warned me; but I was desperate. Anyone who didn’t seem to be under the impression that she was being tortured, relentlessly and without mercy, was doing better than I was. I knew ECT posed a risk. But I wish someone had told me that I was risking myself.