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Dimensions in Medicine

Hospital Corridor, Bernard Perlin, 1961. Courtesy the Bernard Perlin Estate and Anna Zorina Gallery.

Anything but Nothing

After a lifetime of mental illness, one woman opts to try electroconvulsive therapy. She discusses her decision with her sister.

The first time my younger sister, Margaret, visited a psychiatrist, she was three years old, and so hyperactive and impulsive that our parents didn’t know what to do with her. My mother had been a nurse and my father was an OB/GYN who had originally trained as a pediatrician, so they had a pretty expert inkling that something was wrong.

By age 10 she was so anxious and depressed that she could barely go to school. Sleepovers were aborted. An attempt at an overnight summer camp ended prematurely after a week. By 12 she began to pull out her hair and eat it. By 13 she had lost so much hair she had to wear hats outside. Her diagnoses piled up through high school, though they didn’t all stick. The ones that have endured are bipolar II, generalized anxiety disorder, panic disorder, and trichotillomania.

The love between sick and well siblings is fierce but complex. Growing up, she hated me for how easily normal life seemed to come to me, and dedicated herself to knocking me off my pedestal. I hated her because being her sister was exhausting. Well siblings have a distinct pathology that I share: We must always be as quiet and steady and good as possible to offset the chaos of our siblings’ illness. It was my job to be perfect enough for the both of us.

We fought mercilessly at home and at school, but woe betide anyone else who tried to get a piece of us. I might have rolled my eyes and turned my back on her day after day in the school lunchroom, but I was also the one pinning flowers into what was left of her hair so she wouldn’t have to go to a bar mitzvah party wearing her Hot Topic fedora with her party dress. In return, she gleefully pointed out my zits and stubbled legs to boys I had crushes on, but also cornered them at their lockers and told them, in all seriousness, “If you hurt my sister, I will kill you.” We weren’t mature enough to think this way at the time, but I now believe this was how we loved each other: We buffered each other as best we could from the cruelties of the world, while at the same time acting as each other’s lightning rod, absorbing the full force of each other’s private rage, frustration, and fear.

Margaret’s illnesses and the sedating effects of her medication eventually dealt a fatal blow to her high school career. Twenty-five years ago there weren’t many educational options available to bright children with complex mental illness, and none of them were good ones, so despite having a photographic memory and a Mensa-level IQ, she dropped out after 11th grade and earned her GED a few months later. She enrolled part-time in community college and worked, off and on, at a watch kiosk at the mall, as a jeweler’s apprentice, as a stage manager for the local renaissance fair. But her panic attacks and depression got in the way of her ever being able to work full-time or earn a degree.

When she aged out of our parents’ insurance at 30 she had to go on disability and Medicare; no private insurance plan would take her, and she was unable to work enough to get coverage through an employer. Obamacare has since restored her eligibility for private insurance, but again, she cannot reliably work enough to afford the type of plan she needs. And because she’s not allowed to work at all on disability, she has struggled to find meaningful ways to fill her time. She lives frugally on her benefits and as much money as our family can legally give her. She’s had multiple, severe relapses requiring intensive treatment.

Even so, she has found a measure of happiness and purpose. Eight years ago her partner, Nathan, came into her life. More recently, she found a position as a part-time volunteer GED prep tutor at a local nonprofit and thrived in the work. But in the last year things began to fall apart again. The nonprofit had to eliminate the tutoring program. She was prescribed a powerful antibiotic for an infection that wiped out her intestinal flora, which ultimately caused a debilitating ulcer. She had to stop taking her antidepressant because of its side effects, and was unable to find an effective substitute.

Her fragile balance eroded. The illness crept back. She was diagnosed with major depression. She and her doctors couldn’t get it under control, and by the middle of the summer, Margaret had become so ill that she chose to undergo a treatment she’d rejected once before: electroconvulsive therapy.

ECT is the administration of a targeted electrical current to the brain to induce a seizure. It can provide rapid relief of severe mental health symptoms. In the early days of ECT, doctors used high doses of electricity without anesthesia, often leaving patients with broken bones and severe memory loss, and it is for this reason that ECT carries the stigma it has to this day. But modern ECT is much more refined. It is considered so safe that it is sometimes administered to pregnant and elderly patients who cannot take medication. The side effects are generally much milder than they were in the past. It is generally very effective.

Margaret proved to be the exception.

 

Liz: Describe what “feeling well” and “feeling bad” means for you.

Margaret: Feeling bad can be a lot of things, but it’s not simple. For me, feeling bad is feeling trapped. Stuck in numbness, stuck in panic, stuck in an anxiety loop that produces obsessive thoughts and behaviors. Feeling any of those things for a day makes it a bad day. Being in a bad place is when I’m feeling those things and I can’t get out. Knowing my coping mechanisms are failing. Knowing the medication is not helping the way I think it should. It’s not just feeling bad because of a traditionally unpleasant emotion or mood. And it’s not just the symptoms. It’s also the blows to my self-esteem and my feeling like I’m failing. Feeling like I should have more control than I do, and when I don’t feel well, that leads to hopelessness.  

Feeling good at this point is feeling at all. But beyond that, it means feeling either confident in an outcome or being OK with not knowing; feeling like the world is not only interesting, but worth having a look at. Feeling like there are possibilities is a big part of it. It’s not about happiness, although I’ll certainly take it. I see my life and I see something on hold until I can handle it. Feeling good is feeling like I can handle people, handle problems, and I don’t worry about not being enough. Feeling good is feeling up to the task of life, at least mostly.

Liz: Describe what your Big Sad has been like and why you decided it was finally time for ECT.

Margaret: It was numbness, “The Nothing,” as I like to call it, and knowing how wrong that was. Losing the ability to lose track of time: It would seem like hours had passed and it would only have been a minute or two. For weeks. With no relief. All I could think about was the passage of time—how long until I took my meds, how long until I could go to sleep, how long until my next appointment. How long was this going to last. When when when. One day I was smoking in the stairwell and it occurred to me that this might be permanent (not true, but I was wearing down), and that I didn’t know how I was supposed to live like this. And that’s when I realized that was the first thought on a way down a very dark path.

I had already researched a few options, and I decided ECT was going to be the fastest and likely the most effective option. I didn’t want to get to the point where I started debating the pros and cons of continued life. I didn’t want to get to the point where I started risking my life with drugs or booze in order to feel something. I think there is a “this far and no farther” point for everyone; in this place at this time, that was mine. I was afraid if I started down that path, even if I stopped, The Nothing would start to feel familiar. I never want that to feel familiar. Scared was good then.

Think of the brain as an Etch-a-Sketch. It can, to a certain extent, be reset by “shaking” it.

Liz: What did you think about ECT the first time your doctor proposed it, a few years ago? Why did you reject it the first time?

Margaret: I knew about it intellectually, but emotionally it scared me. It was first proposed as a way of reducing my meds. [But] I wasn’t in crisis. I was afraid of some remote possibility of brain damage, and it didn’t seem worth it to me just to get off some meds.

Liz: I got a panicked phone call from Mom after you decided to start ECT because of her frankly traumatic experience as a nurse treating patients harmed by it in the ‘60s. How did Nathan take it? Did anyone else freak out or try to talk you out of it? You wrote a very moving post about your decision on Facebook that many people responded to.

Margaret: Mom didn’t try to talk me out of it at all. She may have freaked out to you, but she didn’t to me. She asked for the phone number of someone to talk to so she could ask questions, but she trusted that my doc and I could make a good decision for me, and she said she was behind me 100 percent. She took me to one of my treatments when Nathan was dealing with school stuff. Dad told me about her experience. Mom never did until I told her I knew, and all she said was that it was a different time and different technology, and that her experiences had nothing to do with me.

Nathan just said, “OK.” I said, “Really?” And he said, “I want you well.” He knows this stuff, and he’s also studied it. [Nathan is enrolled in an advanced-practice psychiatric nursing degree program—ed.] If I said I wanted to try bloodletting, he would challenge me, but not this. He was confident he could handle it.

No one freaked out or questioned it. I’ve probably been isolated long enough that my friends wouldn’t have felt like they got a say if they did object. And I think most people don’t understand it well enough to object to it or endorse it. I did get some questions, technical stuff, and I did get one concern that “coming out” about it on Facebook might open me up to some nastiness from “friends” of friends (which didn’t happen, though maybe I set the post to only be read by friends), but that’s it. 

Liz: How does ECT work? 

Margaret: Think of the brain as an Etch-a-Sketch. It can, to a certain extent, be reset by “shaking” it. A seizure resets a lot of the brain, like shaking an Etch-a-Sketch, so your brain chemistry can go back to factory settings. It’s not a perfect system, because other things get reset too. But it can help.

You get anesthesia, so no food or drink, just like before surgery. You have someone bring you in, they take a urine sample to make sure you aren’t pregnant (which I imagine they don’t do to men), you lie in a surgical bed, and someone comes around to start your IV. After a while they kick family out, and when it’s your turn they put you to sleep and paralyze your muscles, and then they induce the seizure with electricity. When you wake up, you are a little confused, but not overly; you go home, you sleep a couple of hours, and you probably remember nothing of the experience.

Liz: Was that your experience?

Margaret: Not every time, no. There were a couple of times where the anesthesia wore off before the paralytic did, which is terrifying, and it was for a short time my version of hell. And a couple of times I was more than a little confused. Never “who am I?” confused, but “what happened, why are you here, am I going home now?” confused. Which isn’t terrible, but it’s not something I’m comfortable with. And I have had side effects I did not anticipate or appreciate.

Liz: Like what?

Margaret: I can look at things and know I used to know their names, and now that information is gone. It once took me about a minute to figure out where my ignition was. I don’t know how to use certain things on my computer anymore. I forgot Nathan’s birthday. I’ve lost words and definitions. I have built up my identity as being the “smart” one, the one who never forgets anything, so when I can’t remember something, I’m not familiar with that feeling. It’s scary.

And I developed panic attacks associated with it. I’m having one now talking about it, but I can control it. Before I quit ECT, they were sobbing, screaming affairs. Now it’s just a lot of shaking. It’s like my terror switch has turned on and won’t turn off. That might not be a side effect of the treatment, but a problem with the paralytic; I don’t know.

Anxiety is not usually a side effect of ECT. You can find stories about it, but it’s not a common thing.

Brains and bodies change. Things can stop working. The goal is to feel better, not stay on the same meds forever.

Liz: So your experience has definitely been unusual.

Margaret: I think so. Certainly everyone is respecting that I’m having a problem, and it is not on the list of side effects you see on medical websites. And while anesthesia or paralytic issues were always a possibility, it’s also not the norm any more than it would be the norm for an appendectomy. Shit happens. I’m still not sorry I did it.

Liz: You had to terminate the therapy early because it triggered your anxiety disorder. Why are you not sorry?

Margaret: I had a really good week after the last treatment, until about five minutes after I hung up with the scheduler who wanted to know when I would be coming in for my next treatment and I started wailing like I was being killed. That scared me. The way it would scare me if I saw a teapot and started screaming. That’s when it started to go bad. But it was a good week. And as much as I’m hating life right now with the anxiety and paranoia and panic attack after panic attack, weirdly, I’m pretty sure I’m not depressed. Or not as depressed as I was. Because I can feel all this, even if I’d rather not. And I can laugh, make jokes, sing along with the radio, which I hadn’t done in like a year.

Maybe I traded one problem for another. Maybe once I figure this out I’ll be pretty good; maybe I’ll be back where I started. At the moment, I have no idea how to fix this. But the people handling the treatment were great. And while some kinks need to be ironed out, I was surrounded by people who really were helped by ECT.

So even if my experience wasn’t great, I had the guts to try. It may still be benefiting me, and it works for a lot of people. I won’t knock it. I mean, unless I have some lurking permanent damage. Then I might be mad.

Liz: So what are you going to try next?

Margaret: I don’t know. I have to get over my physical problems first, see how much that is affecting my panic and mood. Maybe TMS? [Transcranial Magnetic Stimulation is highly targeted magnet therapy that is sort of like a much milder—and therefore less effective—cousin of ECT.] Maybe an antidepressant again? Maybe something new. I am sort of stubbornly proud I haven’t dipped into the benzos again, even though I’m walking around shaking like a leaf and feeling like I’ve been lit on fire. [Ed. note: Margaret is struggling to reduce her dependence on benzodiazepines, which are prescribed for anxiety but which are notoriously addictive.] I feel like if I can get by without upping my dose, I can handle whatever comes next. Just hopefully it comes soon. 

Liz: Do you think you’d try ECT again in the future, if your doctors can figure out why you’re having such an unusual experience with it?

Margaret: In order to stop having the panic attacks about ECT, I had to close that door. So in my own mind I knew that was over. And the panic attacks have stopped, unless I think about the actual procedure (and now it only feels like being shot at, as opposed to a nuke going off). If I ever get over that through therapy or time, you never know. I mean, I hated artichokes until I was 30. Things can change. I’m going to try something else now. But if my only two options ever come down to The Nothing and ECT, I’ll take the ECT. I’ve never encountered anything that was completely out of the question, just a few things that get put into the “if there is no other choice” category. I’m putting it behind me, but I’m not killing it and stuffing it in a bin.

And if someone ever wants my blessing to go ahead and do it, if they understand the procedure, and they understand the risks, and their doctor is on board, they have my blessing. Something just got in the way of this being a good option for me—my physiology, my mood, my other issues, whatever. It’s still an important tool.

Liz: Have you ever been tempted to dive into alternative therapies or pursue a physiological diagnosis instead of a mental health diagnosis?

Margaret: I have. Nothing has ever particularly come of it. And I’m afraid I’m too much of a skeptic to lend the requisite faith to alternative therapies. I follow what makes sense to me. And if I argue with a psychiatric diagnosis, it’s in favor of a different psychiatric diagnosis: depression instead of bipolar, for example. Mostly it’s an academic argument. And most of my grousing just comes from feeling bad about myself and my situation. I feel sorry for myself and want things simpler. I don’t think they are.

I mean, I’m sure I could reduce some of my anxiety symptoms if I gave up smoking, caffeine, food with flavor or whatever, but not cure it.

Liz: Do you think you’ll ever be done trying new medications? Or treatments?

Margaret: Probably not. Brains and bodies change. Things can stop working. Having to go on blood pressure medication caused me to have to change one of my psych meds. Something can always come up. And there’s always something on the horizon promising something better. If something great comes along, I’ll try it. If something stops being effective, I’ll replace it. The goal is to feel better, not stay on the same meds forever.

Liz: Does equilibrium feel out of reach at this point?

Margaret: Mood-wise? No. I’ve had it before. I can have it again. Life-wise? Maybe it does today. It didn’t yesterday. It’s possible.