This is an extraordinary post -- can you call it a post? Incredible Susan - thank you for sharing so deeply, writing so beautifully, being so searingly honest and demonstrating power of reflection in the face of complexity ... So much worth quoting..✨
Thank you, Brigid! This was not an off-the cuff essay. I had been wanting/trying to write this for many years. It's pretty important to me, and I am grateful to Awais for publishing it.
Feel very grateful to have read something so well crafted and long cultivated — and yes, wonderful Awais published it 👏🏼 have upgraded my subscription as a result, so I could share appreciation. Will enjoy reading his archive now .. 🌷
Thanks for finding a way to write this. I couldn't put it down. And I think I have a faint sense of what the pleasure of language might be like for you after experiencing the musical passages in your essay. And perhaps I have the faintest insight into aphasia, not being able to find words to express the insights gained from reading this, or the ambivalent memories of McLean Hospital I recalled in the process--I was a psychology intern there a decade ago. I would love to share this essay with the students in my liberal arts college course on psychopathology. Would we be able to learn more about the nature of your depression and what has helped you manage or overcome it in the American Scholar essay you mentioned? I know you took a long break from publishing. Please let me know if you have any other recent work I could consult to gain insight into how you understand your depression and what has helped you recover.
Dr. Mahler, I’m so impressed with your post. I especially appreciate your willingness and ability to expose your vulnerabilities to an audience. I thought I would write about the ‘adverse events’ I experienced during ECT treatment.
I have treatment-resistant depression and have been through the usual gamut of treatments-SSRIs, SNRIs, adjunct stimulants and anti-psychotics, inpatient care, IOPs, individual and group therapy. I heard about TMS and had high hopes, which quickly crashed. At that point, like you, I felt desperate enough to try ECT. Since this was a short time before the interest in psychedelics for treatment of depression, I felt this was the ‘last stop’ before pursuing the more invasive Vagus Nerve Stimulation. I understand statistics and methodology and so I was confident that ECT was an effective treatment for depression. But I was still anxious about the method.
After having my vitals checked by a nurse, along with administering a PHQ-9 (really? I was fairly sure I had it memorized), I walked across the hall and laid on a gurney. I was introduced to the Respiratory Therapist, standing above my head, taping electrodes on my forehead; the anesthesiologist at my left elbow, preparing his various potions to knock me out very briefly; a nurse at my feet, who smiled encouragingly at me; and finally, the psychiatrist at my right elbow, who explained the function of the dials on the black box behind him. The box that would send a current of electricity to one side of my brain sufficient to induce a seizure. Then it was over and all was well for the first 7-8 treatments.
Then I woke up from a session and multiple nurses were scurrying around me, instead of the usual calm monitoring of a single nurse. I was asked if I had eaten or drunk anything before the treatment? Of course not, I answered indignantly. But my blood oxygen level was stubbornly staying at an insufficient 85, unless I was on a high level of oxygen. They called EMS to deliver me to the ‘medical’ hospital a mere 4/10s mile away (that’s the distance we were billed for). I spent 3 days in the hospital with aspiration pneumonia being infused with antibiotics as they slowly stepped down the oxygen levels I was receiving. I had to delay ECT a couple of weeks until my cough cleared.
A month later I had finished with the acute treatment phase and was having the first of six monthly maintenance treatments. Afterwards, there was once again much scurrying about me. I became aware that my chest was hurting. I was also aware of doctors and nurses whispering to my husband in the hall. But they put me in the wheelchair as usual and walked me down to the elevator with my husband and the nurse and I waited for our car. The slip of paper I was given that had always stated the date and time of my next treatment just said “No More Treatments.” I was so confused.
It was left to my husband when I got in the car to explain it all. He said my heart had stopped for two minutes following the seizure. A brief pause was expected, and apparently protocol dictated that they observe me for 30 seconds, and then the anesthesiologist gave me chest compressions for 90 seconds, at which point my heart started. No wonder my chest hurt.
They just told my husband to take me home. Instead, he called our PCP, who was alarmed by the story and told us to go straight to his office. The ECG he administered was normal. But he called my cardiologist to see if she could check me and decide if I should be observed on a telemetry unit. She said to come straight to her office. She also administered an ECG, which was also normal. After some thought, she sent me home with a Holter monitor and I was monitored remotely. I had no more incidents.
My ribs continued to hurt for four months. I had X-rays taken but, as my PCP and the radiology tech told me, micro fractures sometimes don’t show up without more advanced imaging. The pain interfered with my job of working with students with severe disabilities but I kept at it because I was in shock about the whole thing. The final chapter of my ECT experience (I hope) came about 18 months later. At that point, I sat in a nephrologist’s office as she questioned me about how my blood work had, a year before, started showing that my kidneys were no longer up to par. In fact, they were operating at about 45% of normal functioning. She asked if I had any issues with my heart. I told her I had a cardiac arrest during an ECT treatment. Chest compressions?, she asked. I answered affirmatively. She nodded and said that would have been enough to damage my kidneys.
Psychiatrists have told me that each of my ‘adverse events’ were one in a thousand to ten-thousand events. But they and their aftermath were traumatic to me. They have also made me angry, particularly because the kidney damage prevents me from taking some types of medication that would help me with other issues.
I am not ambivalent about ECT. Despite the persuasive statistics, I would be very upfront about my experiences with anyone who asked my opinion. Fortunately, five years later, I am doing well with Spravato treatments.
Thank you again for the article, and if you’ve read to this point, thank you for reading my ECT story.
Beth, thanks for offering up your story. Wow. I don’t know that doctors warn people about aspiration pneumonia or kidney damage. I feel like if they warned people about everything, no one would do it. That’s appalling that the team left it to your husband to explain what had happened. I wondered for a long time whether my Dr had been worried about a lawsuit when I became delirious (which I would never have pursued), or if he just didn’t care. It turned out that was not the case. I don’t think your team acted responsibly. I’m glad you’re doing better.
The psychiatric profession demands that you square the circle. This is an old mathematical problem going back to the Greeks— how can one create a square that has exactly the same space as a given circle? This is still an impossibility, even in modern times.
How can you decide what to do, when action can cause damage and death, and inaction can cause damage and death? If there ever was a situation that is crazy-making, that would be it.
I too have suffered from depression but never half as bad as yours. My first bout lasted for 20 years. I have also suffered with anxiety. There was a period of nine years when I had low grade anxiety attacks for most of my waking hours. Fortunately, 40 milligrams of citalopram have reduced my anxiety attacks to 3 or 4 brief ones a day which I am able to calm through meditation.
As a bipolar patient and a psychiatrist myself - having experienced a bunch of very troublesome side effects, this is where I draw the line: my own experience with medication cannot interfer
Theres most of the time data on the side effects
How salient they are depends on how frequent and dangerous they are, and that's it
Psychiatrists with lived experience have a lot to offer but that should NOT include weighting side effects differently due to our experience
Psychiatry as a professio is extremely unscientific, with random shit pulled by "experts" - but do not worry, a lot of medecine is like this aswell
Doubting of what we do is always good - there’s indeed much reason to doubt
Absolutely wonderful post. Here in Scotland I heard Rebecca Laurence reading from her memoir and future novel at the Royal College of Psychiatrists winter meeting two days ago. She is a psychiatrist, has bipolar and has written extensively about her own treatment with ECT. Many similarities. Huge admiration for both of you.
Wow. First, my heart goes out to you. This is incredibly moving — you speak powerfully into the void. Honestly, what is one to do when situated between such intractable options? I have immense respect for your courage.
Second, in reading this, I am filled with gratitude for my own choices a long time ago. Faced with a bipolar diagnosis with which I did not (and do not) disagree — my experience fit the criteria perfectly — I chose to step away completely from all psychiatric treatment. I just did not trust it, knew enough from studying the brain just how sketchy the science was, and threw my lithium in the garbage after 10 days.
After which my hell continued, but with a small shift. It became easier to move forward because, in that moment of cutting myself off from standard treatment, I made a deep commitment to discover for myself what drove my cycles by studying my own inner experience. That commitment carried me through many more dark valleys, and eventually, I got lucky. Didn’t die. Found a way out. And those intense mood swings are decades behind me now.
In the intervening time, I have learned so, so much about the structure and dynamics of inner experience that set up and drive such patterns as bipolar disorder, depression, and their many cousins. But because I have been working independently, focusing on a realm considered off-limits to ordinary science — the essential domain of subjective experience — I have struggled with how to attract the light of mainstream attention. At this point, it is as if I live in a foreign land, speaking a different language. My world only peripherally intersects with the norms that have been held and defended for so long. So much of what lies within us all remains hidden to those accustomed to interpreting experience through the lenses of behavior, cognition and neurochemistry rather than peering directly into the dark caverns of our suffering. Not just hidden, but essentially defined out of existence.
I can understand. With the tools we have now, there seems to be nothing to be gained by turning attention into the darkness, while at the same time a huge risk looms of falling headlong into the abyss. But there are new tools. New ways to study this previously ineffable realm with precision, discipline, and safety. I’ve been developing these for the past thirty years.
I know — why would anyone trust what I’m saying as an absolute nobody? But if this speaks to you even just a little bit, please do take a look at my publication. It’s in its very early stages as I carefully build a solid foundation for the science before launching into more wide-reaching writing about it. At the moment, as a complete outsider with no institutional connections, what fuels my effort is a simple trust that something will come of it eventually. The need is too great for this to fade into oblivion.
Once again, thank you for your passion in sharing your pain, your ambivalence, and your massive, very important questions.
Just a comment to echo the words of appreciation that have been said better by others leaving their thoughts. I don't have lived experience but I do struggle with being an ambivalent psychiatrist and it's good to know I'm not the only one.
This is an extraordinary post -- can you call it a post? Incredible Susan - thank you for sharing so deeply, writing so beautifully, being so searingly honest and demonstrating power of reflection in the face of complexity ... So much worth quoting..✨
Thank you, Brigid! This was not an off-the cuff essay. I had been wanting/trying to write this for many years. It's pretty important to me, and I am grateful to Awais for publishing it.
Feel very grateful to have read something so well crafted and long cultivated — and yes, wonderful Awais published it 👏🏼 have upgraded my subscription as a result, so I could share appreciation. Will enjoy reading his archive now .. 🌷
Thank you Brigid!
Thanks for finding a way to write this. I couldn't put it down. And I think I have a faint sense of what the pleasure of language might be like for you after experiencing the musical passages in your essay. And perhaps I have the faintest insight into aphasia, not being able to find words to express the insights gained from reading this, or the ambivalent memories of McLean Hospital I recalled in the process--I was a psychology intern there a decade ago. I would love to share this essay with the students in my liberal arts college course on psychopathology. Would we be able to learn more about the nature of your depression and what has helped you manage or overcome it in the American Scholar essay you mentioned? I know you took a long break from publishing. Please let me know if you have any other recent work I could consult to gain insight into how you understand your depression and what has helped you recover.
FYI the Scholar essay is called “Inferno” and the ECT essay is “Shock Therapy: A Psychiatrists notebook.” But no, they are not about “recovery.”
Hi Thomas. Thank you for this generous comment. If you message me, I’m happy to talk.
Thomas, if you haven’t already seen these earlier posts by Susan on this blog, you’ll enjoy them too:
https://www.psychiatrymargins.com/p/shame-animator-of-symptoms-therapeutic
https://www.psychiatrymargins.com/p/a-literary-lesson-on-how-to-deal
Dr. Mahler, I’m so impressed with your post. I especially appreciate your willingness and ability to expose your vulnerabilities to an audience. I thought I would write about the ‘adverse events’ I experienced during ECT treatment.
I have treatment-resistant depression and have been through the usual gamut of treatments-SSRIs, SNRIs, adjunct stimulants and anti-psychotics, inpatient care, IOPs, individual and group therapy. I heard about TMS and had high hopes, which quickly crashed. At that point, like you, I felt desperate enough to try ECT. Since this was a short time before the interest in psychedelics for treatment of depression, I felt this was the ‘last stop’ before pursuing the more invasive Vagus Nerve Stimulation. I understand statistics and methodology and so I was confident that ECT was an effective treatment for depression. But I was still anxious about the method.
After having my vitals checked by a nurse, along with administering a PHQ-9 (really? I was fairly sure I had it memorized), I walked across the hall and laid on a gurney. I was introduced to the Respiratory Therapist, standing above my head, taping electrodes on my forehead; the anesthesiologist at my left elbow, preparing his various potions to knock me out very briefly; a nurse at my feet, who smiled encouragingly at me; and finally, the psychiatrist at my right elbow, who explained the function of the dials on the black box behind him. The box that would send a current of electricity to one side of my brain sufficient to induce a seizure. Then it was over and all was well for the first 7-8 treatments.
Then I woke up from a session and multiple nurses were scurrying around me, instead of the usual calm monitoring of a single nurse. I was asked if I had eaten or drunk anything before the treatment? Of course not, I answered indignantly. But my blood oxygen level was stubbornly staying at an insufficient 85, unless I was on a high level of oxygen. They called EMS to deliver me to the ‘medical’ hospital a mere 4/10s mile away (that’s the distance we were billed for). I spent 3 days in the hospital with aspiration pneumonia being infused with antibiotics as they slowly stepped down the oxygen levels I was receiving. I had to delay ECT a couple of weeks until my cough cleared.
A month later I had finished with the acute treatment phase and was having the first of six monthly maintenance treatments. Afterwards, there was once again much scurrying about me. I became aware that my chest was hurting. I was also aware of doctors and nurses whispering to my husband in the hall. But they put me in the wheelchair as usual and walked me down to the elevator with my husband and the nurse and I waited for our car. The slip of paper I was given that had always stated the date and time of my next treatment just said “No More Treatments.” I was so confused.
It was left to my husband when I got in the car to explain it all. He said my heart had stopped for two minutes following the seizure. A brief pause was expected, and apparently protocol dictated that they observe me for 30 seconds, and then the anesthesiologist gave me chest compressions for 90 seconds, at which point my heart started. No wonder my chest hurt.
They just told my husband to take me home. Instead, he called our PCP, who was alarmed by the story and told us to go straight to his office. The ECG he administered was normal. But he called my cardiologist to see if she could check me and decide if I should be observed on a telemetry unit. She said to come straight to her office. She also administered an ECG, which was also normal. After some thought, she sent me home with a Holter monitor and I was monitored remotely. I had no more incidents.
My ribs continued to hurt for four months. I had X-rays taken but, as my PCP and the radiology tech told me, micro fractures sometimes don’t show up without more advanced imaging. The pain interfered with my job of working with students with severe disabilities but I kept at it because I was in shock about the whole thing. The final chapter of my ECT experience (I hope) came about 18 months later. At that point, I sat in a nephrologist’s office as she questioned me about how my blood work had, a year before, started showing that my kidneys were no longer up to par. In fact, they were operating at about 45% of normal functioning. She asked if I had any issues with my heart. I told her I had a cardiac arrest during an ECT treatment. Chest compressions?, she asked. I answered affirmatively. She nodded and said that would have been enough to damage my kidneys.
Psychiatrists have told me that each of my ‘adverse events’ were one in a thousand to ten-thousand events. But they and their aftermath were traumatic to me. They have also made me angry, particularly because the kidney damage prevents me from taking some types of medication that would help me with other issues.
I am not ambivalent about ECT. Despite the persuasive statistics, I would be very upfront about my experiences with anyone who asked my opinion. Fortunately, five years later, I am doing well with Spravato treatments.
Thank you again for the article, and if you’ve read to this point, thank you for reading my ECT story.
Beth, thanks for offering up your story. Wow. I don’t know that doctors warn people about aspiration pneumonia or kidney damage. I feel like if they warned people about everything, no one would do it. That’s appalling that the team left it to your husband to explain what had happened. I wondered for a long time whether my Dr had been worried about a lawsuit when I became delirious (which I would never have pursued), or if he just didn’t care. It turned out that was not the case. I don’t think your team acted responsibly. I’m glad you’re doing better.
The psychiatric profession demands that you square the circle. This is an old mathematical problem going back to the Greeks— how can one create a square that has exactly the same space as a given circle? This is still an impossibility, even in modern times.
How can you decide what to do, when action can cause damage and death, and inaction can cause damage and death? If there ever was a situation that is crazy-making, that would be it.
I too have suffered from depression but never half as bad as yours. My first bout lasted for 20 years. I have also suffered with anxiety. There was a period of nine years when I had low grade anxiety attacks for most of my waking hours. Fortunately, 40 milligrams of citalopram have reduced my anxiety attacks to 3 or 4 brief ones a day which I am able to calm through meditation.
Congratulations on being alive.
As a bipolar patient and a psychiatrist myself - having experienced a bunch of very troublesome side effects, this is where I draw the line: my own experience with medication cannot interfer
Theres most of the time data on the side effects
How salient they are depends on how frequent and dangerous they are, and that's it
Psychiatrists with lived experience have a lot to offer but that should NOT include weighting side effects differently due to our experience
Psychiatry as a professio is extremely unscientific, with random shit pulled by "experts" - but do not worry, a lot of medecine is like this aswell
Doubting of what we do is always good - there’s indeed much reason to doubt
Absolutely wonderful post. Here in Scotland I heard Rebecca Laurence reading from her memoir and future novel at the Royal College of Psychiatrists winter meeting two days ago. She is a psychiatrist, has bipolar and has written extensively about her own treatment with ECT. Many similarities. Huge admiration for both of you.
Wow. First, my heart goes out to you. This is incredibly moving — you speak powerfully into the void. Honestly, what is one to do when situated between such intractable options? I have immense respect for your courage.
Second, in reading this, I am filled with gratitude for my own choices a long time ago. Faced with a bipolar diagnosis with which I did not (and do not) disagree — my experience fit the criteria perfectly — I chose to step away completely from all psychiatric treatment. I just did not trust it, knew enough from studying the brain just how sketchy the science was, and threw my lithium in the garbage after 10 days.
After which my hell continued, but with a small shift. It became easier to move forward because, in that moment of cutting myself off from standard treatment, I made a deep commitment to discover for myself what drove my cycles by studying my own inner experience. That commitment carried me through many more dark valleys, and eventually, I got lucky. Didn’t die. Found a way out. And those intense mood swings are decades behind me now.
In the intervening time, I have learned so, so much about the structure and dynamics of inner experience that set up and drive such patterns as bipolar disorder, depression, and their many cousins. But because I have been working independently, focusing on a realm considered off-limits to ordinary science — the essential domain of subjective experience — I have struggled with how to attract the light of mainstream attention. At this point, it is as if I live in a foreign land, speaking a different language. My world only peripherally intersects with the norms that have been held and defended for so long. So much of what lies within us all remains hidden to those accustomed to interpreting experience through the lenses of behavior, cognition and neurochemistry rather than peering directly into the dark caverns of our suffering. Not just hidden, but essentially defined out of existence.
I can understand. With the tools we have now, there seems to be nothing to be gained by turning attention into the darkness, while at the same time a huge risk looms of falling headlong into the abyss. But there are new tools. New ways to study this previously ineffable realm with precision, discipline, and safety. I’ve been developing these for the past thirty years.
I know — why would anyone trust what I’m saying as an absolute nobody? But if this speaks to you even just a little bit, please do take a look at my publication. It’s in its very early stages as I carefully build a solid foundation for the science before launching into more wide-reaching writing about it. At the moment, as a complete outsider with no institutional connections, what fuels my effort is a simple trust that something will come of it eventually. The need is too great for this to fade into oblivion.
Once again, thank you for your passion in sharing your pain, your ambivalence, and your massive, very important questions.
Just a comment to echo the words of appreciation that have been said better by others leaving their thoughts. I don't have lived experience but I do struggle with being an ambivalent psychiatrist and it's good to know I'm not the only one.