TRIGGER WARNING:
This post contains explicit descriptions of psychosurgery, sexual assault, emotional abuse, and violence in general. If you’re at all unsure if you should read this, you probably shouldn’t.
please note i’ve written a follow-up to this article, “sing for the teachers who told you that you couldn’t sing” and this follow-up clarifies and refines a few things. i’d appreciate it if you saw them as a unit, but i’m leaving this post otherwise untouched.
In case you’re wondering why the tone of this is different, it’s a draft of something I’m preparing for a more formal audience. They care about things like capital letters and citations and all that rot that i ordinarily don’t. Further blog posts will return you to your normally scheduled “hi i’m erica and i want to be e.e. cummings omg i’m so emooooooooo” style.
“Do you know what these scars are?”, Valerie persisted.
“No, what are they?”
“I’ve had a lobotomy.”
-Sylvia Plath, The Bell Jar, p.192
Hi, I’m Erica. You might know me from my Twitter antics, from the extensive navelgazing that is my blog, or because you have the misfortune to know me IRL. Like most women my age, I wear a lot of hats: big sister, college student, nanny, goalie, best friend, bad dancer, trans woman, former lead singer of a bad high school riot grrl band, etc. I also have a much darker hat that I don’t really like to talk about: lobotomy survivor. Just like Valerie, I’ve had a lobotomy. Unlike Valerie, I don’t tell everyone I meet…this is the farthest I’ve ever stuck my head out of the psychosurgery closet and let me tell you, dear reader, I am terrified.
People tend to greet this with what ends up being a slew of rapidfire questions, so let’s get them out of the way:
- I was eight and a half.
- It had something to do with gender identity but it also had something to do with that I had a “maladaptive personality” but no specific diagnosis was ever given. I’ll discuss this a bit more later.
- Yes, this happened in the United States.
- Yes, this happened in the 1980s.
- I had a transorbital, aka “icepick” lobotomy, where an instrument called an orbitoclast is placed above the tear duct in a patient’s eye and forced through the skull and into the frontal lobe, where it is then swung about to separate the frontal lobe from the thalamus, followed by a deep cut across the frontal lobe, and then the instrument is removed.
- No, I’m not a unique case; the hospital in question performs lobotomies to this day, as well as the more socially acceptable versions of psychosurgery like cingulotomy. (They admittedly do fewer than five lobotomies a year so far as anyone can tell, as the hospital in question is fairly secretive.)
- No, I’m not telling you this because I want you to take pity on me.
- Yes, I’m still angry.
- Yes, I’m sure.
The thing about being a lobotomy survivor is that it’s not exactly polite dinner table conversation, so it’s kind of developed a bit of a parallel to being trans in my life. As a person without a whole lot of privilege, the relative blessing of being able to pass for cis in a world which requires it as a condition of existence is somewhat useful, but it can make it difficult to talk about being trans and find an appropriate space to do it. Similarly, I have to pass as an ordinary, whole-brained person on any given day, since as much as the writer of the song in the title treats disability for attention and laughs, I don’t have the option of ascribing everything that I do right or wrong to the fact that there’s this dead chunk of my brain sitting in my skull. I can’t just say please excuse her for the day, it’s just the way the medication makes her. In other words, just like I have to pass for cis the second I walk out the door of my bedroom, I have to be able to pass for someone who hasn’t had a lobotomy.
For years, since I had a diagnosis of such, I was just told to say I was autistic, though that’s disrespectful to autistic people since autism is naturally occurring (whereas lobotomies are not), poorly studied, and mostly surrounded by curebies, non-autistic people who speak for autistic people and effectively silence them rather than encouraging society to look at them on the whole. My little sister is autistic, and we’re like peas in a pod anyways, but…it’s unfair to both someone who has had a lobotomy and someone who is autistic alike to tell me to just say that’s what it is. I mean, after all, “I have a diagnosis…” just means a doctor says that’s how it is, and my track record with doctors is not great. I’m not telling a half-truth to cover for them anymore, I shall not be their dupe.
Though we remain many, we’re hard to locate, and the veil of shame around psychosurgery is truly wretched. I’ve talked online to someone else who’s a lobotomy survivor…one other person. She’s a bit older and had a lobotomy for a condition which sounded a lot like schizophrenia but she was never formally diagnosed other than by the doctor who lobotomized her; she was one of Walter Freeman’s last creations in the 1960s, a contemporary of the most famous living lobotomy survivor, Howard Dully. For me, confronting my identity as a lobotomy survivor is much akin to when I pulled myself out of my post-transition denial of being trans: I just haven’t found other people like me, even though I know they’re out there. Unlike being trans, there isn’t just a random chatroom out there on the internet, so finding each other is a lot harder, especially for the post-Freeman era of lobotomies because Freeman’s narcissism led him to keep extensive records, something that isn’t as likely when it’s a bunch of doctors trying to figure out whether or not something works. I know that the hospital in question was involved with a number of dubious experiments around gender identity and sexual orientation at the time and I know that until the time comes that I have better answers, I am assuming that this was done to attempt to force me to be happily cisgender, especially given the dark past the doctor in question has. As for making me happily cisgender, it didn’t work.
Crawling through the web of shame and horror has been pretty messy. I’ve known since I was 16. My mother, who was still angry that I had commenced eating meat, took me clear across town to my favorite restaurant, the Shady Glen Dairy Store (the original, not the poser one in the Parkade) and told me, as I ate the second bite of my delicious Bernice Original cheeseburger, that I’d had a lobotomy and it wasn’t her fault. That’s exactly what she said: Well, you had a lobotomy but it wasn’t my fault. I assumed this was one of my mother’s many lies and just let her keep talking, trying to pick up if there was so much detail in her story that it must be true. The Shady Glen, full of depections of laughing gnomes and smiling children eating ice cream, would never be the same again; I had nightmares about those gnomes for years. My mother, for once, told me the truth, and did it on her terms in the most abusive way possible. I never ate at the Shady Glen since, and I pretty much put up a solid wall of denial that my mother could be actually telling the truth, even though her narrative was filled with a level of detail and blame-shifting that I knew damn well indicated she’d found the will to pull through her pseudologia fantastica for long enough to tell the truth. She even told the truth as to why, basically that I wouldn’t refer to myself as male and that I had had a ‘psychological break’ about a year before lobotomizing me. With every detail, it was like watching snow pile up…there comes a point where there’s so much snow that they’ll cancel school, and with a pathological liar, there’s a point where there’s so much detail you realize they’re telling the truth.
One night, the next summer, I “fell down the stairs and hit my head” at my grandparents’ house. My grandmother drove me to the hospital, where they promptly performed a head CT (that’s a CAT scan of the head) to preclude serious injury. I had indeed fallen down the stairs, but there was planning involved. The doctor who handled the head CT looked like he’d seen a ghost and ran the head CT again, and I knew then that something had indeed happened. Eventually he pulled my grandmother and I into a room, and after dropping the slide four times, just asked point-blank if there was some kind of head injury that could explain this. I muttered like a transorbital lobotomy? and he said but they don’t do those anymore… Oh, sir, how I wish you had been right. He treated me with respect, compassion, and kindness, though, and gave me a copy of the slides and told me to keep them somewhere very safe.
The entire drive back to my grandparents’ farm was pretty much my grandmother muttering about how much she wanted to kill her firstborn and me complaining about how much the seatbelt hurt my chest. The next morning at breakfast we explained things to my grandfather, who did as he does and nodded and grunted a lot and just made sure I was okay. I owe much of my being allowed to be myself to my grandparents and this was no exception. I mentioned that I didn’t really want to talk about it anymore and they’ve respected that boundary ever since. My grandmother had business in Minneapolis that week, and I went to the library and started reading. I found out about Rosemary Kennedy and realized that we’d both been tarred with the same words and lies. I learned about Sigrid Hjertén and that a botched lobotomy killed her. I learned that for once, I wish my mother had been lying. My grandmother and I really grew together that whole summer to the point that I’ve considered her my real mother ever since.
Being a lobotomy survivor makes you a little different, yes. Your frontal lobe controls a lot more than your ability to avoid saying bitchy things (the rest of my brain has to do that), but also lobotomy survivors have certain patterns to our existences. The almost inescapable consequences are childishness, weight gain, seizures of various sorts (mine look like I’m shivering and are mercifully rare), apathy, and often incontinence. I have all of those except, thank whatever belief system you have, incontinence…and most days, I’m not apathetic, actually. The issues of mental development are open to debate, as all the studies done about the effect of lobotomy on intelligence involved lobotomies on adult women, given that women accounted for 60-70% of all lobotomies, not people who were lobotomized as children or in early adolescence.
The prevalence of lobotomy in women is particularly chilling given that frequently the very traits that led to someone being targeted for lobotomy were the same traits that society suppressed in women, such as assertiveness, sexual aggressiveness, and oppositional behavior. In other words, being an uppity woman could cost you your frontal lobe. As for how I turned out, it didn’t make me a happy cis man , it didn’t make me any less “uppity”, and though it does diminish how I perform on stupid statistical tests like IQ or whatever standardized “intelligence” test is in vogue this week, I’m happy to report I’m about a month and a half from being, at least on paper, Dr. Erica. You can keep calling me just Erica, thank you very much, that whole honorific thing makes me feel old, as we discussed yesterday.
A couple of years ago, when I started to figure out how to stop being ashamed of being trans, I started telling a few people in my life what was really going on with me, because I know I have to stop being ashamed of being a lobotomy survivor. The interlinked stories of my trans narrative and my psychosurgery narrative are woven in the same cloth perilously close to each other. And though I feel like talking about it is begging for attention, I really need to say it because this is why I bristle so hard at accusations of being “lucky” for the age I transitioned at: I’d already paid the price earlier in life and that price has left me with lasting damage both in my brain and to my body, because messing with someone’s brain does that. By the time I transitioned, they’d tried to cure me with everything from rape to physical violence and then when that didn’t work they came for my brain. In short, though there are many ways in which I am fortunate in life. from being a poor disabled female with another statistical anomaly, secure safe housing, to having gone to college to my amazing friends to yes, having lived most of my life in the right body. But please don’t ever think I’m “lucky”…as much as I’ve learned to live without an entire mind and with the flaws that come with it, I do wish I were whole.
and there’s the name of my blog explained: inchoate — imperfectly formed or developed. erica – well, duh, that’s me.
There are many things I’ve learned on this journey: that a security clearance done on me (come get me, Cathy Brennan) will show that I’ve had a lobotomy but not that I’ve ever had another name. (You do get about 15 misspellings of my legal name, though.) I learned that lobotomy’s ugly children have enjoyed a rebound in popularity in procedures like cingulotomy amongst others, and that on occasion, lobotomy remains part of medicine’s awful toolbox. I’ve learned that I inherited an awful bit of my mother’s pseudologia fantastica myself…not the ability to lie, but the ability to believe that you have done awful and bad things in life, including the belief that I deserved to be lobotomized for some unspeakable horror that I had done, for some reason too complex to ever explain.
My little sister has the same problem that I do, namely believing herself to be some subhuman creature who deserves all the bad she’s lived with…except she’s autistic and hasn’t had a lobotomy. She and i both are recovering from a lot of unspeakable and unpleasant horror, and discovering that maybe we’re both strong enough to make it. She’s working through the horror of how my mother and society tortured her, too, and you know…we’re both getting better little by little in our own ways, and writing this piece is part of that for me. I don’t believe I deserved it anymore, and it’s taken me until a few weeks ago to know this, though I’ve been trying to believe I didn’t deserve it since, well, the day I had my last cheeseburger at the Shady Glen.
Thank you for listening and thank you for your support…I love each and every one of you.
E.E. Cummings actually preferred his name to be capitalized. (Look at me, I know how to focus on minutiae in order to avoid responding with appropriate seriousness to matters of great importance!)
i needed some witty banter to make the pre-content part longer so the trigger warning would work and also because apparently i needed to learn something today.
(see, i can do it too!)
More seriously, the whole “maladaptive personality” business… I mean, who could be *well*-adapted to your mother? If somebody was, I’d be pretty worried about them. Was anything wrong with you (even by the most retro DSM-IV standards) other than having a nearly-unimaginably abusive mother and not liking it?
well, at the end of the day, you can always push it back onto gender identity (and yeah, this is why i have some trouble with pathologization, though i see its necessity in terms of the medical-industrial complex and treatment in many cases) and i suspect that formed part of it.
i know enough now to know i was an “it” by the time it happened and that’s been kind of scary to confront…i always thought i was dehumanized because of the lobotomy, not *before* it, and the more i put the pieces together i know that someone believed this would solve something or make me docile enough to not give about what i was in any circumstance.
Some of the things you mentioned even more reiterate to me the need for trans visibility and human rights for women. The things society has done to women for being nothing more than that in is inexcusable, as is the same for trans and homosexual people. That is why I find people like the, as you put em “wadfems”, are counter productive for their own movement by erasing trans people. I am also sure that the “evil tinkerer’s toolbox of evil” was likely used extensively on homosexuals, often against their will. The thing that this message sends me reminds me of the horrible things people do when they use personal biases to violate the autonomy of another individual. The harm principle seems to get walked on when people believe they can “Fix” or “Conform/Reform” the nature of another to match their personal implied preferences (or to tamper with individuality).
Your post reminds me why we need laws to protect people from being the victim of mental health related incarceration just because someone disagrees with that persons sensibilities that are not harmful to self or others. There are literally places where any family member can have you committed with out reason and do so without repercussions for their unsubstantiated claims. Law allows for parents to have children submitted to therapy against your will to “Cure” your homosexuality or transsexuality. But even with in the pathologization present there is still some of that targeted at women for “being hysterical”, for “deviating from the way others prefer you to be” though not as bad as once was. That is where one of the intersections of being trans and being a woman in lies. Honestly it shouldn’t matter if there is a “Innate biological cause” for transsexuality, neither radfems, nor any other opponent has the right to protest what we do with our bodies, nor proselytize or discriminate against us for doing so.
As with lobotomies, shock therapy, aversion therapy, and once upon a time forced hysterectomies (women only), and other things done to GLBT and Women alike it is a violation of ones autonomy, of ones body and self, and for reasons that are quite inexcusable. They share similar cultural components, sexism and power at their core. Furthermore, it’s not just the violations of autonomy that we should be concerned with, but the social pressures to force us to conform to some presupposed social consensus. Like sexism, cissexism, heterosexism, ableism, racism, et cetera that work on obfuscations of a persons identity to circumvent ones autonomous rights. To be clear, the need for rights, protections, and reform on the issue of rights for GLBT do not hinge on it being a choice, nor on the “sensibilities” of women and children for theirs.
We don’t yet have laws fully protecting GLBT children, or children in general, from harmful procedures being done on them by their parents. With things like you mention it’s all the more important we protect children’s right to not be tortured for violating gender or sexual orientation norms, their right to their bodies and their identities. In my opinion, no one has the rights to tell you what you can and can’t do with your body, whom you do it with, or to do something with your body, mind that you don’t expressly consent to without coercion. That would be a distortion of the rightful use of power, oppression, and tyranny. When one group lets the thought exist that their rights and identities are more valuable or valid than another’s we all lose, especially if with enshrine them into law.
So I know we’ve talked about some of these things before but…
a) I still have no words to describe how horrifying and vile both these surgeries and your mother are
b) How you’ve managed to confront and handle all this is one of the many reasons why I respect the fuck</em out of you
It must have been hard for you to tell this to the public. I know how hard it was for you to tell me in private.
I’ve just recently found and begun to read your writing. I cannot imagine all of the things you’ve gone through. The emotional abuse I received as a child pales in comparison and gives me a great deal of perspective. Thank you for sharing this and allowing me to read it. I wish you only the best going forward.
This shows, once again, how desperate people are to be surrounded by “normal” people, that they’re more willing to main and kill people than consider learning to live with people who are different from them.
I know there is nothing I can say to make this better.
I can’t really add to this, E, because you already know that I love you with my entire being. I am forever grateful you entrusted me to this well before going public. I remain repulsed by your mother. I remain angry at the psychosurgeon and will continue to rally for you to expose him for what he is: a butcher to the living.
a true criminal changes his tools but not his crimes.
Incredible, on a multitude of levels. I’m sorry i don’t have anything more constructive to say. You, the article, the content, all incredible in their own ways.
this is an amazing story. thank you for sharing it.
I did want to add that I thank you for this piece, and I found it illuminating. I am sure that none of it was easy, and to share it like this takes a lot. Given what I have seen of your writing, and your outlook, I’d say in the end you won, not them. It is truly wonderful to have people like yourself in this world to stand in contrast, and against the odds of those who try to taint, and soil it. I also hope you don’t mind the lengths of my comments, I tend to do that and I apologize if it’s a little much. Again, I am sure you probably know more about the things I say than I myself do, and if ever I am wrong I am open to critique.
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oh, Erica. i’ve heard your name before; but this is the first post of yours i’ve actually read. it won’t be the last. (i’m a fellow non-capitalizer and e.e. cummings lover, by the way; and the fact that you reference coelacanths in your heading endears you to me even more.)
i want to thank you for writing this. but i won’t thank you for being brave. as a trans survivor of multiple forms of heavily-stigmatized mental illness myself, i have strong opinions about people saying i’m ‘brave’ for telling my story. complimenting someone on their bravery for speaking out merely confirms and ratifies stigma; if the stigma weren’t there to begin with, no courage at all would be required for us to be honest about our experiences.
instead, i will compliment you on being a strong, kickass woman who has prevailed despite every attempt to make her knuckle under; a woman who has made a difference in the lives of others and whose own life is a product of character, determination, resiliency, and undeniable talent. you are so much better than the people who tried to determine your life for you. you have been and continue to be responsible for yourself, for your own life, and for your place in the world– you, and not the people who thought they knew better than you– and that is what i thank you for: for your clarity, for your insight, and for your vision.
you are my heroine today, and i am proud to be on your side.
<3
I just came across your post, and must say I was deeply touched by it. I love you for sharing your difficulties with such openness. It definitely gives me a lot to think about in my own life, not only as a transgender person, but in everything I do or politically fight for.
I hope you and your sister keep strong(er). I was made stronger by you already.
love,
viviane
I apologize on behalf of the human species for our total crapness and cruel stupidity.
This saddens me beyond the capacity of words. For what it’s worth, I’m sorry this happened to you and am, I don’t know, effected(?) by this writing.
Thank you for writing this. I’m sorry this happened to you. You’re obviously wicked smart and brave, and a lot of people might not be in this situation. I’m amazingly impressed that you’re willing to talk about this and I hope & believe it’ll change things.
An absolutely breathe taking tale. My heart goes out to you.
I love you back.
You have more courage than I. No, I’m not a lobotomy survivor (I won’t elaborate beyond that), but I can certainly appreciate how difficult this was.
And you wrote:
For this, I commend you and respect you deeply.
as a psychology and neuroscience student, we’re always taught that lobotomies happened “back then.” thank you for the reminder that it still happens. this type of abuse deserves more visibility.
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Reblogged this on Kink and Other things and commented:
You might read this and think “this doesn’t matter. It was a million years ago. it was before my time. People don’t do things like that anymore.”
But you’re wrong. It does matter. This is our history, as people. This is how we used to treat people who were different. We need to know this history. It’s heartbreaking and it sucks to read, and it will probably make you cry at least once when you read this history, but it’s important. We have to know our history. We have to know our history because if we never learn our history, we’re doomed to repeat it.
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I love this piece of written speech you decided to share with us.
The way you write is very interesting and lively, and what you write are things that need to be shared with the world.
there’s much more I would like to comment- another day, perhaps.
Amazing story! Thank you so much for having the courage to share it. I’m appalled but not terribly surprised that this is still going on in America. My only wish is that you would share the name of the hospital/doctor who performed this atrocious, inhumane procedure so they could be brought to justice. Maybe then nobody else would have to endure what you have.
Your writing skills definitely don’t seem to be affected, as you’re very good at articulating your emotions (and have better spelling/grammar than 90% of the people I see online). Best of luck in your future endeavors!
Thank you for telling your story. I’m sure I’m in the majority of people who thought lobotomies were reserved for the scary sort of video games and the annals of history. I can’t imagine. Please don’t be ashamed of what happened to you, the people who should feel shame were the adults who didn’t protect you, or who did these things to you. Anyone who feels anything but intense compassion and a desire to help is not worth engaging with.