This is the only picture I have of myself around the time I was being treated. I hate this picture because of when it was taken, but I needed to take a self-portrait for a class, and I also needed a friend to translate my shirt, so: double-whammy. (I think it says "Cat and Girl"? I sure hope it does!)
I spent December of 2005 in the Walter Reed psych ward preparing to have electroconvulsive therapy, aka ECT, commonly known as electroshock treatment.
I ended up having six treatments total, and they left me no better off than before, although I’d lie to my doctors and tell them I felt ever so much better, thank you, yes, so much better, excellent, this was just what I needed in order to get myself off the ward and into the world again.
ECT marked the death of my faith in doctors and an eight-year break between me and any form of psychology, psychiatry or psychotherapy. I still innately distrust anyone who tells me they majored in any psychology or psychiatry, despite being included in that category.
In my early 20s, the symptoms of my multiple sclerosis began to arise in a serious way, and I reluctantly sought medical help. I’d known there was something “different” about me for a long time, but I’d ignored it.
My symptoms became less manageable: My seizures became more frequent and I had migraines, long periods of fatigue, muscle spasms, and body aches. I also began to hear new things -- as in, I had been hearing music that wasn’t there for years, but now I began to hear whispers and occasional voices, and this change worried me.
I told my GP about the fatigue, body aches and headaches. I kept the aural hallucinations to myself. He had my iron levels tested and told me to pick up some iron supplements.
“Your diet is probably off kilter,” he said, flipping through my chart. “How’s your sleep?”
I told him about my chronic insomnia, and he told me that between that and my anemia, it explained my fatigue. It all made sense. I left with a resolution: I could take care of this myself. No big deal!
Except: I still heard things and I was still having seizures. I didn’t exactly know that they were seizures -- I just knew that occasionally the world went dark and something happened.
I didn’t want to talk to anyone about the seizures and the voices because I didn’t want to deal with what would come next. I didn’t know exactly what it would be, but I’d seen "One Flew Over The Cuckoo’s Nest," and I couldn’t imagine it would go well for me.
Driving to work one day, I had the strange sensation of being disconnected from my body, a feeling of everything around me coming from very, very far away. The radio suddenly sounded tinny and distant. I couldn’t understand the words in the song that was playing, which I’d sung a hundred times before. I had just enough time to pull over to the side of the highway and park before I had a small seizure on route 95: my military training at its best.
I made another appointment, and was referred directly to a psychiatrist -- do not pass Go, do not collect $200. My new shrink ran me through the checklists, then promptly decided that between my bouts of fatigue and my hearing things, I was either suffering from a schizoaffective or bipolar disorder. With time -- very little time -- he settled on the bipolar, and began running me through the mood stabilizers.
I was put on Depakote. I was lethargic, apathetic, I gained 55 pounds -- although I’m not sure how, because I didn't give a damn about food. I had no sex drive and I could barely think straight. We switched to Lamictal, another mood stabilizer, which wasn’t better. Then there was another mood stabilizer, and another. None of them made me feel okay. Some helped with the seizures. None touched my aural hallucinations.
No one sent me to a neurologist for the seizures. No one bothered to do a full physical workup for any of my issues, actually. After asking me a lot of questions about my “episodes,” they were diagnosed as conversion disorder, a somewhat controversial diagnosis in which a physician essentially states that a patient’s psychological trauma is manifesting itself in physiological symptoms.
I switched psychiatrists and was eventually put on Lithium, that deceptively pretty pink pill. At first Lithium seemed like a success, because my mind cleared. Sure, all my physical symptoms were still present, but I wasn’t in a drug-induced haze -- hooray! Headaches? Check. Seizures? Check. Migraines? Check. Aural hallucinations? Check. Wait, what had I gone in for help with again? Who cared? At least I could think again for a while.
Then my blood tests went haywire. Lithium wasn’t passing through my kidneys the way it should. My doctor lowered the dose, it would go too low; she would raise the dose, and it would accumulate again.
Then the doctor began asking the tricky questions: was I still hearing things? I was. This was now aggressively pursued. Now I was working through the anti- psychotics, too: Geodon, Seroquel, Abilify, Risperdal, one after another.
I was interviewed about what I heard: What were the hallucinations like? Were they frightening? (Not anymore, no. They were just a normal part of my life.) Did the voices tell me to do anything? (Nope. It’d be nice if they would remind me to do things, though. Could this be arranged?) Did the voices call me names, or say negative things to me? (No, it was mostly just music or whispering, never anything mean or awful.) Did anything make them go away? (Nothing yet, but not for lack of awful psychiatric efforts.)
I began to wonder why, if my aural hallucinations weren’t making me dangerous, they even mattered.
In November of 2005, my doctor sat me down. My body couldn’t handle the Lithium, she told me. This happens sometimes. She recommended I be checked into Walter Reed to be safely taken off of all my medications, then submit to a full course of ECT. There was so much more to this conversation -- an explanation of what ECT was, of how ECT could potentially free me from the need to take medications or at least, as many medications as I had been taking up to then. After a conversation about the importance of giving my system a rest from all of the drugs, she sent me home with a pile of printouts on withdrawal and ECT and asked for a decision in the next few days.
No more drugs, I thought. Or at the worst, fewer drugs. That sounded amazing.
I grew up with the idea that doctors knew what they were doing, that they were competent and trustworthy and had most of the answers. I guess that’s true it many cases, but there’s this idea that we shouldn’t worry too much about questioning their answers -- this idea that they should know what’s going on, so we should trust them, accept their answers and move on with our lives.
It never occurred to me that maybe, just maybe, I didn’t need any of this at all. It never occurred to me to go to a whole new cadre of doctors and get a brand new set of opinions.
After all, all of these doctors had seen me, and they all said the same thing: I had bipolar disorder, and I needed ECT, because I was a Special Snowflake and I couldn’t handle medications. They were Doctors: just a step or two below God because they saved lives.
I don’t believe this anymore.
I checked myself in to Walter Reed in early December of 2005 and began tapering off all my many medications. I made friends with a chaplain who had PTSD from his time in Iraq and a man with schizophrenia who was a polyglot, like me. The polyglot and I made in-language jokes at the expense of a terrible psych nurse who would tell patients that they would be healed of their affliction if they would only accept Christ into their hearts. We would guess at her diagnosis in our different languages -- Narcissistic Personality Disorder, maybe? -- until she threatened to put us in solitary. It was fun, in a way.
This is how Mad Men portrays ECT. It looks pretty civilized in their version. Strange, but clean, and very medical.
ECT itself was hell.
To prepare for ECT, in the morning, I’d be taken to the ambulatory procedures unit, given an IV, and strapped to a table. I submitted to all of this, because it was For My Own Good. A blood pressure cuff was put on my calf, electrodes were put on my head, and then I was given first a muscle relaxant, to make sure I didn’t convulse during the seizure the ECT would induce. In the older versions of ECT, they didn’t used to give this drug, and patients could be badly injured.
The muscle relaxant was scary. No: Even though I was told precisely what would happen, the muscle relaxant was terrifying, because once I was given this drug, I was awake but I couldn’t move. The tech that gave the drugs was always so kind and reassuring, but I was never okay with this part. Shortly after this, he’d give me a sedative and I’d fall asleep. Then they’d go forward with the procedure, which I’m told lasted about a minute.
The doctors told me I’d wake up in the recovery room. I don’t remember that. I remember waking up from the first treatment in my room. I’d gotten a bad batch of the muscle relaxant; it didn’t quite work.
“It was the last of the bottle,” the doctors told me, so I’d convulsed quite a bit. My entire body ached, and my head was throbbing. I couldn’t think or put a sentence together. I threw up. I couldn’t eat. I could hardly walk. I didn’t know where I was, and I was so scared and sad that I just cried.
My doctor came in, and handed me a statement I’d written, explaining what had happened. It only helped a little.
A few days later, we did it again. And then again. And again. Six times, in total.
At some point, in the middle of it all, I was in bed, dazed, sad, terrified, listening to my roommate scratch at herself.
“Don’t do that,” I said. She was a self- injury patient. “They’ll catch you and then they’ll give you Consequences.” It happens so quickly, becoming institutionalized.
“I can’t stop,” she said. “I’m feeling anxious tonight.” This is how we all learned to speak. My name is Sarah and today I am feeling X.
“Slap, instead,” I said. “They can’t catch you if it doesn’t leave marks.”
Listening as she began to slap at her thighs, I traced the sticky marks the IV tapes had left on my arms when I began to hear muffled music playing quietly, as though it was coming from a great distance. My music, my hallucinated music. I have never been so grateful. I started to cry, humming along, and made a resolution: I would not give this up, the one beautiful thing in all of this.
“Don’t cry,” my roommate said. “It doesn’t hurt much.”
I never had bipolar disorder at all.
I discontinued all psychiatric treatment after my ECT. I did that thing you’re never supposed to do and lied to my doctors. I stopped seeing them. I felt just fine for years. In 2009, my symptoms flared up again. I went to Johns Hopkins with no medical records and presented all of my symptoms, without mentioning my previous psychiatric history.
I was given a full neurological workup, and after six months and several MRIs I was diagnosed with relapse-remitting multiple sclerosis, a disease that easily encompasses all my symptoms.
I disclosed my psychiatric history to my neurologist and my new GP after I received my MS diagnosis. They were both sad, apologetic for their profession, and both told me this isn’t that uncommon.
Let me say that again, please: They both told me this isn’t that uncommon.
My doctors at Walter Reed told me there would be side effects from the ECT: confusion, cognitive damage, memory loss. When I left Walter Reed, I left them lying though my teeth: Oh, no more voices, no more music, it’s a miracle! In truth, though, I left unable to focus, unable to feel or connect with the people around me. I was deeply depressed for months.
I also lost months of my life: I don’t remember a single movie or book I read for the year before ECT, I didn’t remember new acquaintances, I don’t remember a huge amount of what we did in 2005 without prompting, and weirdly, I forgot how to drive around the area we lived in at the time -- my internal map was wiped clean.
There are strange pieces of 2005 and even the time of my treatment that are completely clear -- and other areas that are utterly blank.
Some of my memories came back with prompting. My husband and friends have talked about 2005, and I’ve remembered things when they’ve retold them to me, but only vaguely, as though they were something I’d seen on a screen. Huge pieces of this essay were written with the help of my journals at the time. I’ve kept a daily journal since I was a kid, which is good, because otherwise, most of this part of my life would be lost.
And that’s important, because I don’t want this to be lost.
I don’t want to remember this, exactly, either. I don’t want to remember that this happened to me. “ECT: It Happened To Me” is not something I want to be able to write. This is one of the worst things that ever happened to me, worst of all because I allowed it to happen: I was complicit in this. I was trained by my own doctors to be complicit in this, but I made these decisions, and I said yes.
This is true, and it is real, and it is still happening. This is happening to someone in a ward right now. Doctors can be lazy, or can be relying on the diagnosis of another doctor who wasn’t doing their job. Be careful where you put your faith, and how much faith you are putting where. Doctors make mistakes. Some doctors take the easy way out. Some doctors just don’t give a damn if they fry your brain rather than looking to see if you have a neurological disorder. Ask me how I know: It Happened To Me.
I say this, even now, even with a neurologist that I adore, even with a GP that I love and trust. I still double and triple- check their work; they may have the degree and experience, but that doesn’t mean they didn’t have a crappy morning, or what if they didn’t have their cup of coffee yet today? Check their work. Ask for a second opinion. Be careful out there.