My receptionist is back and I had an in office appointment today. Almost all of my appointments have been by phone since March 13, 2020, but even with the rare in office appointment, I would greet the patients and have them go into the room with me. Now, she roomed the patient and then I went in. Before I did, I did the doctor knock. That sort of quick, short littler knock you do as you’re opening the door. You pop your head in first and then walk into the room and give your excited greeting. I came really close to crying. I had no idea how much I missed that knock. That moment where you’re standing outside the door and you pause and prepare yourself mentally for what’s on the other side. Sometimes it’s a brief, happy moment. Sometimes it’s a frantic review of the chart that you really should have done sooner. Sometimes it’s a feeling of exhaustion and dread and “can I really make it through another patient today?” If it weren’t for this pandemic, for this seismic shift in how we do medicine, I would have never appreciated that knock, that moment, that island of time and place that is the outer edge of the intimate relationship between doctor and patient. There is joy in my bones right now. The quiet sound of angels singing. A feeling of home in my heart.
We have now had a fever for 42 days. Off and on. Mine had gone away yesterday and I thought, maybe this is it. Maybe this was a fever that lasted 40 days and 40 nights, that started two days before I stopped being 40 years old. And maybe if that’s true, there is a deeper spiritual meaning to it. So, I researched the number 40.
They say 40 in the Bible essentially means, a really long time. It rained for 40 days and 40 nights when Noah was out on the ark. The Israelites wandered in the desert for 40 years. Moses’s life is divided into three 40 year phases. Jesus was tempted by Satan for 40 days. He stayed with the disciples 40 days before ascending to Heaven where he is seated at the right hand of the Father.
They also say 40 represents a new beginning. It has to do with it being a factor of 5 and 8, and 4 and 10. I will skip over those details. After 40 days, the flood receded and it was a new world. After 40 years the Hebrews were considered to have paid the price for their disobedience and given a new life in the promised land. After 40 days, the Holy Spirit anointed the disciples and they were reborn. In Judaism, the embryo is considered to be formed at 40 days gestation. And a pregnancy lasts 40 weeks.
It also represents water, baptism, mikvah. There is the great flood. In traditional Judaism a woman goes to the mikvah ritual bath for purification 40 days after having a son, 80 days after a daughter. The mikvah is filled with 40 seah of water.
According to the Jewish Talmud, at 40 years old you gain the gift of understanding. You come to begin to fully understand all you’ve been taught.
I have been feeling exhausted lately, burdened. And feeling like I will forever be wandering in the wilderness, the promised land always just slightly out of reach. Time and again telling myself, you just need to get through this phase and then things will get easier. At what point do I admit to myself it’s a lie, that this is as good as it gets? In other words, I have been hopeless and have lost that sense of possibility I’d been so grateful to regain back in 2015 when my PTSD was healed.
My life is better than a lot of people’s and I know this in my head and I know this in my heart. But their suffering did not seem to alleviate mine. I kept telling myself to get over it, but I just couldn’t.
Perhaps it’s the nature of this fever. You feel good for a day or two or three. Really good. And you’re so grateful. You have energy and joy and you can run and get things done and enjoy life. And you think this is it, I’m better. I can get on with my life. And then it comes back.
Perhaps it’s this quarantine grinding us all down. Or the fact I had three people close to me in my life a year ago and now I have none. And I’m in isolation and can’t replace them. I cannot picture my future because none of us can. We do not know what will happen with the economy, with the pandemic, with the election, with the way things are done and the way we relate to one another. And so, how do we have a sense of possibility? There are infinite possibilities and none at all.
And so I looked to the number 40 for hope. If my fever lasted 40 days then maybe there was a divine reason God had allowed it to go on so long. Maybe God had a plan for me. Maybe beyond 40 years and 40 days and nights I would emerge from the wilderness and finally enter the promised land. Purified and born again.
But here I sit on day 42. Maybe sometimes a fever of unknown origin is just a fever of unknown origin.
I had the energy to play with my daughter today. She couldn’t believe it. We ran shuttle runs and played charades and had a jumping competition. I felt great. For now, I’ll take that and be grateful. We’re not promised a damn thing in this life. If I ever return to good physical health and energy I will be grateful in a way I couldn’t have been before. When we emerge from this quarantine and I can be with my patients in my office again, I will be grateful in a way I couldn’t have been before. And when the second forty years of my life are easier than the first (and they will be. I know this much is true), I will be grateful in a way I couldn’t have before.
I hate the saying what doesn’t kill you makes you stronger, even though it’s true. I mean, what a crappy gift: the knowledge now you can make it through something even more awful. But this truth has saved my butt more than once and I put faith in it that my children’s difficulties have done that for them. Because life is hard and the best thing we can do for our kids is prepare them to face whatever it throws at them without falling apart. But what doesn’t kill you also makes you more grateful (if you let it).
I’m grateful for my kids’ fever because at one time their immune systems were so dysregulated, their bodies couldn’t mount a fever response to invading pathogens. I’m grateful every time my 14 year old acts like a jerky teenager because he gets to a live a relatively normal teenage life now instead of being in PANDAS hell. I’m grateful every time I eat a meal without an abusive husband there criticizing what I’m eating or not eating because that was not always the case. I’m grateful to be a doctor, the good and the bad, because it was almost taken from me and I gave literal blood, tears and a piece of my soul (and my cervix) to get through my training. I’m grateful for the sense of possibility because for so many years in PTSD, it wasn’t there as I dwelled in that place between life and death.
So maybe that’s what the promised land really is: gratitude. If we never wandered through the desert for forty years, how could we even know we were in the promised land? Maybe it is not a static place, this promised land. Maybe it can’t be. Maybe it’s an oasis where we replenish ourselves and get a rest before heading out again. We never know how far into the wilderness we will go and for how long, but we know the promised land is always there. Until we reach the end of this life and enter the world without end and find that possibility we have been been seeking once and for all.
Jeffrey Epstein, the billionaire pedophile, died in a presumed suicide a few days ago. I cannot get over how similar his plans were to Jeremy Noyes’s, my perp from med school who now sits in federal prison in Arizona.
I am not just referring to their love of raping children. Jeremy often spoke of having a private island or farm where he would propagate his colony of child sex slaves and work towards creating the perfect race through the use of bought DNA. So did Epstein. In fact, Epstein spent millions seeking the advice of Harvard scientists , hosting a conference on his private island at one point.
Jeremy spoke frequently to others like him online. There was a whole community. I told myself they were lying, that it was all just a sick fantasy world. But, clearly, it was not.
I am a doctor who treats patients for PTSD. They tell me about the powerful men who’ve taken their childhood. They have no reason to lie to me. They don’t speak about it publicly. Oftentimes I’m the only person they’ve told.
Jeffrey Epstein is not an isolated case. He is not a freak. His crimes do not die with him.
There were so many people who knew what Epstein was doing and they did nothing. Made zero effort to save these girls. I cannot comprehend it. I can’t. I risked my life, my children’s live,s my career, everything. I risked everything to try to save one little girl. How is it that children matter so little that we would allow this go on? I didn’t understand it with Sandusky and I certainly don’t here.
It is not a conspiracy theory to not believe Epstein killed himself. In fact, to accept the story that this was suicide is a choice to talk yourself out of obvious reality. Men like Epstein don’t kill themselves. I know. I knew a man like him very well. Epstein’s case clearly held the potential to expose just how widespread the culture of child trafficking is. The media can try to shame me into not saying this publicly all they want. If their lame attempts work on you,you’re part of the problem too. Real shame comes if you have lived as a child sex slave. Shame you will never completely heal from. Boohoo to you, dear reader, if speaking out on this could be embarrassing for you. What would the neighbors think? The real question is, what are the neighbors up to themselves? This isn’t rare.
The choice to turn in a man like Jeffrey Epstein, like Bill Cosby, like Jerry Sandusky, like Jeremy Noyes, is difficult to follow through on but really quite simple to decide on. It is not a morally ambiguous situation. You will never find such a clear ethical quandary: try to stop a child rapist or not. You will not lie on your death bed at the end of your life and say, my only regret is that I turned that predator in. Unfortunately, it doesn’t seem very many of these people are likely to lie there and regret the fact they didn’t. And that truth makes it ever more difficult for survivors to heal. The truth that they’ve done nothing wrong is easy to see, but accepting it and moving on is the most difficult thing anyone will ever have to do.
I still feel some level of shame when I look at this. I still remember how I was made to feel by my medical school, the medical community as a whole, my family and complete strangers talking about me online. I spent years believing I was a crazy slut and bad mother. I wasn’t even consciously aware of it, but it drove everything I did. Like the trauma itself, the afermath almost cost me my medical career. It almost cost me my life. It stole a lot of things from my children.
Speaking truth is the only antidote to shame so I will tell my story over and over, to anyone willing to listen. I will tell you the heroic parts and the horrific parts and the parts that might make you not like me. To remind myself I did nothing to be ashamed of. They did. And to remind all my fellow survivors out there they’ve done nothing to be ashamed of. They are goddamned heroes and all the many people who failed to protect them are the ones who ought to be ashamed. And that, dear reader, might include you.
I am sitting here reading immunology. Cytokine storm, interleukin-1, natural killer cells. I am doing the thing I have been doing for almost 13 years now. I am trying to fix my babies.
Autism and PANS and Lyme and on and on. Their immune systems have betrayed them. They are attacking their own brains. I must stop the marauding hordes. I must. I’m their mother, after all.
I decided to become a doctor almost 13 years ago. Soldier Boy was a few months old. He’d already had more medical tests and seen more specialists than most of us will see our whole lives. Diagnosis after diagnosis. The idiot doctors couldn’t see he was perfect.
He was perfect. He is perfect. But, he’s not. His body betrays him.
I decided to become a doctor for a lot of reasons. Some noble and some not so much. One of the reasons I became a doctor was because I wanted to fix my son. I wanted to save my perfect baby from the many sicknesses he’d been born with.
I had his little brother while I was studying to apply to medical school. He was different. He was not sick. No tests, no specialists. He never even got a cold or had a fever. Ever.
Then, when he was 3 1/2 he stopped eating and began threatening to kill us and… you can read about it here. He got PANS.
Doctors have been no help. I am now finally a doctor all these years later. Almost 13. And now it is my job to figure things out, to help them, to fix them, to save them.
And so I am sitting up, exhausted, reading through immunology slides trying to understand the autoimmune nature of autism. Trying to understand the things I can do for Lyme triggered PANS that has been going on for eight years.
Innate immune system, cellular immunity, microglial activation, …
As I sit looking at the diagrams of these various immune processes, they are familiar to me. You learn so much in medical school they say it’s like drinking from a fire hydrant. You retain the things you use in whatever specialty you wind up in. But I am finding now the things you haven’t thought of in 10 years come back quickly when you need them.
Ten years ago I sat studying Immunology in my living room in Erie. Its a very clear memory. Sitting in the large overstuffed brown arm chair next to the end table with the touch lamp. The same end table I’d placed our Little People manger scene on at Christmas time. We lost baby Jesus and I replaced him with a Matchbox car because… because little boys. The chair was in front of the big bay window where my boys would climb up excitedly when the garbage truck came by.
I remember so clearly sitting there reading my Immunology book the night before the exam. I was behind on studying and I was excited it was clicking. I think I will do well on this test, I thought.
I was behind on my studying because of The Ordeal. Because of Jeremy. I failed the exam the next day.
Amazingly, the unit after that, Neuroanatomy, I rocked. It was considered the hardest course of first year. I was being actively traumatized by a sociopathic sadist, and I somehow managed to kick some ass. I’d gone from scared to pissed off at that point. I’d decided I was going to find a way to turn him in no matter what. Once I got to that place in my head, focusing on studying wasn’t a problem. I’m very good at compartmentalizing my mind when it’s required
But Immunology, I failed. And so I had to remediate it that summer. Immunology and Pharmacology. He did too. I saw him there. It was in those two weeks of remediation that I turned him in. I passed the remediation exam. And then went and turned him in. I was busy.
For so many years this trauma has been at the center of the story I tell of myself. Not so much to other people but to myself. For years it made me believe I was worthless. And then I entered recovery and I became defined as a survivor. Each step closer to becoming an attending physician was marked with a “screw you Sylvia” (Sylvia being the head of my med school who slut shamed me and tried to kick me out) and a “you’re in jail, Jeremy but look at me”.
I had come to accept this. But now, it isn’t true anymore. It isn’t the biggest part of my story.
Being a doctor was always about my boys. And now it is again. They’re the reason I fought to stay in med school when Sylvia was trying to force me out, heaping degradation on me. They’re the reason I stayed up til 2 in the morning studying organic chem long before I ever met Jeremy Noyes. They’re the reason I have started my own practice now. The thing I have been dreaming of for almost 13 years.
In some respects, it is easier to have rape and torture at the center of your story than to have your sick babies there. What mother wouldn’t rather endure suffering herself than to see her babies suffer? But we are not put on Earth to choose the easy path.
I named this blog I’ll Sleep When I’m Dead when I was in residency working 90 hour weeks, 36 hour shifts. But the truth is, for doctors, the sleepless nights and exhaustion pretty much end when graduation day comes and attending life begins. For autism moms, there is no graduation. There is no finish line. We really will wait our whole lives for a sound sleep.
I went into medical school to become a different kind of doctor than the ones my son had. Condescending, close minded, clueless. I went undercover. Deep cover. And I unavoidably lost my way. Drank the Kool-Aid because there really is no other way to make it out alive.
But I’m on the other side now and I remember who I was. I am an autism mom who became a doctor. I am an autism mom. I am an autism mom who knows immunology and pharmacology and neuroanatomy. I am an autism mom who gave her soul and body and mind and heart for her medical degree. And I have it. And *that* is the story of me. Jeremy and Sylvia were mere diversions.
I am going to help my children and my patients. I am going to speak out and challenge all they do that is wrong. I am going to sleep very little. Because that’s what autism moms do.
Good night. I have some reading to do.
It’s been four months since I recovered from my seven year bout of PTSD. (See previous entries of my blog for real time coverage of the recovery process). My coworkers don’t really know I had PTSD (although I did give a talk on PTSD and tell them the reason I was giving it was because I had it, I think they either weren’t paying attention or blocked it out). They just know that all of a sudden a few months ago I stopped being so quiet and agreeable all the time. At first they thought it was great. I’d blossomed. Developed self-confidence, gotten a backbone. They assumed it to be the result of residency training. But as the months have gone on and I’ve become more and more my true self, they’ve started commenting to me they miss the old quiet me.
I’m a little too opinonated, they say. Talk a little too much now. I’m too hard on the interns. I’m angry, they say. Well folks, what I really am is … me. The real me not suffocating under PTSD. The real me not constantly trying to avoid the bad things I think are coming. The real me who isn’t convinced I’m going to get kicked out of the medical profession if I let on to who I am.
I am indeed angry at times. Unapologetically angry. Righteously angry. Old testament angry. Jesus turning over the money changers table angry. Malcolm X I’m-done-begging-for-crumbs angry. No apologies.
I am hard on the interns. Hard on them like my senior residents were hard on me. I thank God my seniors were so hard on me. Guess what? We’re training them to be doctors. We’re not at the brownie jamboree seeing how many friendship bracelets we can collect. They’re here to learn to be excellent doctors: thorough, hard-working, devoted, compassionate physicians who think things through and can communicate and lead. Some interns need more nurturing than others, but even the most fragile (hi, I had freaking PTSD when I was an intern. I was about as fragile as they come) needs to be held to a high standard. We owe it to them and every patient they will ever treat.
I do talk a lot and have a lot of opinions. It’s not that I have a lot of opinions that bothers them though. I haven’t met many doctors who don’t have a lot of opinions they feel you must be dying to hear all about. What bothers them is that my opinions disagree with theirs. I don’t find their sexist jokes funny or even acceptable. I’m really such a drag, I know. But I’m 36 and I have a daughter and I’m done tolerating that crap. The male residents are assertive while the female ones are called aggressive and told to tone it down for the same behavior. The male residents really hold the line and don’t take shit while the female residents are told to calm down and lighten up when we do the same thing. To hell with that.
It’s possible I’m a little overly zealous with the assertiveness and rightous anger right now as I delight in my recovery, but can you blame me? PTSD is hell. You’re not dead but you’re only technically alive. I’ve got seven years of pent up thoughts, words, feelings, and actions here.
In my defense, it’s not all anger and thunder bolts around me. I have a lot of joy. I’ve made a lot of progress on forgiveness (entry on that to come). I’m just not PTSD Barbie anymore, putting all my energy into pleasing everyone and always agreeing and going along and not complaining and working myself to exhaustion because I’m afraid everything’s going to fall apart at any moment.
My husband and I met when I was in the thick of the PTSD so he’s had a little bit of a switch-a-roo pulled on him. He always wished I’d be more assertive and talk more, but , as the saying goes, be careful what you wish for.
The thing that’s frustrating about all of this for me is that I’ve been given this amazing gift. PTSD was hell. I can’t tell you how much of the past seven years I had spent wishing I could die. Knowing I couldn’t kill myself because of my kids and asking God why he would put me in that position. The blackness inside of you. The expansive emptiness that feels like it will break you apart. The loneliness you feel like you just can’t bear. And there’s no end in sight. There’s no hope. The fear. Every noise makes your heart race. Do you know how many times your pager goes off a year as a resident? Do you know what it’s like to feel terrifed every time it does just because of the sound it makes? To not be able to trust anyone, not even your husband. To not let yourself open your heart to your kids because you’re expecting them to be gone any minute. To go on psych med after psych med after psych med looking for an answer and all they do is make you tired and remind you you’re crazy.
And I finally escape all that and the people I work with, the physicians I work with, they tell me they like me better the way I was. So, you’ll have to excuse me if I’m unapologetic. If I relish giving them a piece of my mind when it comes to what is right. Silence does not protect us, it fills us with its void until the tensile strength of the matter of us gives out. It’s like compartment syndrome of the soul. You must release the pressure surgically and when you do, sometimes things burst forth and get messy. But it’s the only hope of saving the limb. The real me has come back out and I couldn’t stuff her back in to the old necrotic shell even if I wanted to. And I most definitely do not want to.
His name is Rohit Agrawal and he’s the Secretary of the State Board of Osteopathic Medicine. I didn’t remember his name all these years but I looked him up recently. He’s one of the people who punished me for stopping a sociopathic child rapist. He’s one of the physicians who punished me for stopping a sociopathic child rapist.
Today, it’s his job to handle cases of physicians in Pennsylvania who have had ethical breeches. I’d call it ironic or ridiculous if it weren’t so disturbing and very serious.
In August 2008 he came to my medical school campus, the Lake Erie College of Osteopathic Medicine, and gave the student body a talk about sex and how it could get you in trouble as a physician. That may sound like an odd thing to you, a state physician licensing official coming to muggy Erie Pennsylvania to give a lecture on keeping your knees together to a group of student doctors. But this was no ordinary August day.
You see, two days earlier one of the medical students at my school had been arrested by the FBI for possession and transport of child pornography and obscenity. They had come to his door the morning of a big exam and come into his house with guns drawn and arrested him.
They’d seized his computers and found that he’d been looking at violent graphic pictures of little girls just an hour earlier. Little girls bound and gagged by duct tape with their legs over their shoulders.
When this physician came to speak to us, this leader, this pillar of physician ethics, I assumed he would talk about that child rapist. He started talking to us about a fellow medical student. He didn’t give the student’s name but I assumed it must be this student.
I was naive.
He said this student was sexually immoral. He said this student wasn’t fit to be a physician. He said this student really ought to leave med school now before she got into more debt. Because she wasn’t fit to be a physician. Because she never would be a physician. Let her be a warning to you. Don’t be sexually immoral like her.
I don’t remember the exact moment I realized he was talking about me and not Jeremy, the child rapist. I don’t remember what exact phrase he used that made me realize it. I do remember how it felt. I remember my stomach dropping and my heart racing and the tears welling up in my eyes. I remember the fear and humiliation and anger and confusion and despair. I remember that well.
I didn’t remember his name afterwards. I was so filled with shame after going through my several months long ordeal of rape, torture and humiliation at the hands of Jeremy, that I just wanted to try to forget all of it. Including what Dr. Agrawal did to me.
And so I forgot his name. Because I could. And any crumb of it I could forget was a relief I welcomed.
I couldn’t forget his words, though. Or the shame and betrayal I felt because of them. I couldn’t forget his face.
Years passed. I needed to finish medical school. I had children to raise. I met my new husband and married him. Eric and I spent our first Valentines Day together as a couple in federal court at Jeremy’s trial.
After med school there was residency to tackle. Our sweet baby came along.
The PTSD was with me through all of this. On top of me. Like Jeremy had been. Choking me. Like Jeremy had.
I finally gathered the courage to look up Rohit Agrawal’s name on November 15, 2014. Six years and 3 months after his talk. Six years and 3 months after his assault. That scarlet S he’d pinned to my white coat.
There he was. Still on the state medical board. The secretary now, actually. He’s an emergency medicine physician according to the Google. He’s trained to collect rape kits when victims come into the emergency room then.
I wrote his name down. I typed into a memo on my phone. I did not memorize it. I had to copy and paste it tonight for this piece.
A physician charged with leading the physicians of this state actively participated in publicly punishing a student doctor who’d stopped a child rapist student doctor at the risk of losing her life. He very actively, explicitly, and personally sent a message to hundreds of future physicians that if they chose to do the same they would be punished too.
That. Is. Dangerous.
It is immoral, unethical, and unacceptable.
His name is Dr. Rohit Agrawal and he punished me for stopping a child predator.
From January 2015:
Dr. Steven Gelfand died on January 18th after a brief battle with cancer. He was 66 years old. He was also amazing.
I’m going to tell you about him. And just from reading about it, you’ll be better off for having known what little I can tell you here.
I met Dr. Gelfand July of 2009. He was the attending of my very first clinical rotation as a medical student. The first two years of med school are spent in the classroom and the last two years are spent on rotation. You get to leave the classroom and spend time actually doing medicine.
I’d had PTSD for about a year at this point. My perpetrator, a fellow medical student, had been arrested in August 2008. My trauma officially ended with his arrest I suppose, and then came the PTSD.
After he was arrested, my medical school became upset with me. You see, the FBI released my name (even though they didn’t need to) and implied a lot of things about my personal life, sex life, and mental health in the affidavit they used to arrest the sociopathic child molestor I’d turned in. Some of what they wrote about me was accurate and some of it wasn’t. Two things made very clear by this affidavit were:
1. He was a dangerous sadistic pedophile
2. I had risked my life and the lives of my children to turn him in.
I’d like to think a medical school, an institution charged with shaping the physicians we place our trust in and rely on for our lives and health, would be appreciative of a future doctor risking her life and the lives of her children to stop a fellow future doctor who is a sadistic pedophile from hurting any more women or children. But that’s not how it went.
Quite the opposite.
My school chose to punish me instead. They placed me on probation for having morals below the standards of the community (in reference to the affidavit’s inference that I had engaged in consensual, kinky sex with the perpetrator before The Ordeal began). More than this, they waged psychological warfare on me. They brought in a speaker from the state board of medicine (and an alum of the school) who spoke in front of the entire student body about me, saying I really should leave med school now because I wasn’t fit to be a doctor. Warning them not to be like me. A sexually immoral person. The head of my school told me I would never be a doctor. She said no doctor would take someone like me on for clinical rotations and that even if I somehow managed to become a doctor, I would never have patients because I was so disgusting, they wouldn’t want me touching them.
Such cruel words coming from the head of your medical school, coming to you in an acute post-traumatic state, has such an impact. I didn’t even realize at the time how much I believed her.
I was able to get a lawyer and, after a legal battle, get her off my back (but not before suffering the utter humiliation of being forced to apologize for my behavior to the faculty of my school.) But she had gotten inside of my post-traumatic soul and planted herself there.
Fast forward a year to my first day of clinical rotations. The day she said would never come.
The PTSD had obliterated my self-confidence. Deep inside I was afraid she was right, that I wasn’t going to make it and I should have cut my losses when I had the chance.
I know there is a God because it cannot be chance that I wound up on Dr. Gelfand’s doorstep. By the end of my first day with him he’d shared with me that he had no respect for the head of my school. In fact, he told me, he’d once told her to go f*** herself. He was a Jewish, cursing, bold as all hell, certified angel.
He told me she had once punished a medical student he had rotating with him after he gave the student time off to spend with her mother who was dying of cancer. He responded by sharing his feelings as above.
I ended up telling him what had happened to me. The brave deed I’d done and the evil she’d paid me with. He told me I’d done a courageous thing, the right thing. And he told me not to tell any other doctors like I’d just told him. It could ruin my medical career.
Over the next two years, he became my two special needs sons’ neuropsychiatrist. He was, by far, the best doctor they’ve ever had. He became a mentor for me too. He told me I was going to be a great doctor. And part of me actually believed him somehow.
He was a tough attending. He let you know every single detail you got wrong. But he also let you know when you got something right. And when he did, it really meant something.
He went into medicine for the right reason. He cared about his patients and worked for and advocated for them fiercely. He was good and he knew it, and he earned it.
Dr. Gelfand was right that I shouldn’t tell the other doctors I would be rotating with what she’d done to me. It wasn’t the time for it. She still had the power to end my career. I wasn’t emotionally ready to speak publicly about it yet either.
But I have been healed of my PTSD after seven long years. I am getting ready to graduate from a wonderful, supportive residency. And I’ve never been one to keep quiet.
It was Martin Luther King day on Monday so we talked to our kids about the civil rights movement. We talked about the turning points like Rosa Parks and how those were just moments that sparked off a movement that ha been building for a long time. My son asked me why those particular events set things in motion and I told him no one could say for sure.
The passing of this amazing man has changed things for me. Something has been brewing within me that would inevitably, eventually come out. I didn’t know when.
The silence ends now.
Jeremy Noyes raped me, tortured me, threatened to kill me and my babies. My medical school punished me for risking all of that to do what is right as a physician and as a person. He is now serving 45 years in federal prison. What my school did was wrong and dangerous. They sent a clear message to that school full of future doctors that turning in a child predator could cost you your career. It was unethical, immoral, and unacceptable.
Your seven years is up, LECOM. Let’s talk.
I’ll admit I spend a good amount of time on Facebook. I like to see what politcal/social justice type things my friends from college are up to. I like to post pictures of my kids for distant friends to see. Sometimes I’ll take one of those quizzes: Which Golden Girl are you? (I got Rose, in case you’re wondering. I was really hoping for Dorothy but I guess I haven’t matured to her level of sass and pith quite yet). One thing that dominates my feed is posting from my fellow doctors and nurses bashing parents who don’t vaccinate their kids. And yes, I mean bashing. I don’t mean expressing concern for their children. I don’t mean seeking to find ways to turn the tide of increasing numbers of people not vaccinating their kids. I mean, bitching about them and how they’re screwing up herd immunity for the rest of us because they are bad people who ignore science.
I have issues with this.
Ironically, these people of science are not being scientific at all. The whole argument is that these crazed non-vaccinators are ignoring science. They’re irrational. They’re backwards. They’re stupid. They’re ignorant. The problem with this argument is that the accusers here are ignoring the fact that *they* themselves are not being scientific. Let’s look at the facts:
-By and large, non-vaccinating parents are highly educated with average to above average intelligence. That’s what the research shows us. Most of them have read everything their doctors have read and come to the decision that it’s not compelling evidence to them for one reason or another. So, calling them stupid or irrational simply isn’t accurate.
-Most parents who do not initially vaccinate will vaccinate their children within a few years. The vast majority of patients questioning vaccination cite their doctor as their most trusted source of information. But here’s the rub: the research shows that if their doctor comes at them with the attitude most doctors hold, these parents actually become *more* likey to not vaccinate. What has been shown to work, scientifically, is for physicians to engage in respectful, open minded dialogue with them and not engage in scare tactics etc.
We have an obligation as physcians to pediatric patients of these parents and also to the greater community and society. We’re tossing aside evidence based medicine and compromising both with our attitudes towards these parents.
Why? Basically because this topic makes most doctors really really mad. And we allow really really mad to get in the way of our obligation to these kids. We find it emotionally comfortable to get angry and make it into a moral failing in these parents. Some of it is righteous anger in defense of community health. Some of it is control issues. We don’t like it when patients don’t do what we say. We got into medicine to help people and now they’re not letting us help them. Maybe it makes us sad to see them hurting themselves. Maybe it pisses us off they’re messing up our plan.
I was discussing a law recently with some fellow residents that I read about going into effect recently in a southern state. They were starting to arrest mothers who did illegal drugs while pregnant once the babies were born. Two of us thought it was a terrible law because addiction is a disease and criminalizaing it really wasn’t the answer. Putting a baby’s mother in jail soon after birth is incredibly obviously not good for a baby. Knowing she’ll go to jail if she delivers her addicted baby in the hospital will inevitably lead to some of these mothers delivering their babies at home and not getting proper medical care. They’re certainly going to be more likely to lie to their physicians about what drugs they’ve been doing. The resident in favor of the law was adament that these women must be punished. They’ve harmed their child and they must be punished. The fact that this law was only going to hurt these babies further was not the issue here. Addiction was not a disease, it was a moral failing.
The truth of it is, it is simply easier and more satisfying to write these non-vaccinating parents off as kooks and lost causes. But if you truly believe not vaccinating their children (your patient) puts them at risk, you have a moral obligation to not write them off as a lost cause. You are that child’s advocate. You are a physician practicing evidence based medicine. So act like it.
Parents who are simply questioning vaccinating may or may not know much about it. So, guage how much they know and offer them education in a respectful way. Talk when appropriate and listen when appropriate. Don’t engage in scare tactics. Show them some compassion. This will maximize the chances they will vaccinate today or soon therafter. In case we’re not clear on this: making them sign a release recognizing they’re placing their child’s life at risk by not vaccinating is not productive in this regard.
Some parents are at the point where they are refusing to vaccinate and have probably read up on a lot of what you have to tell them about vaccine safety and efficacy. If you can tell they’re already familiar with the information you have to offer, it’s time for you to sit and listen. Ask them why they don’t want to vaccinate and listen respectfully and compassionately. If they’re open to your responding, then go ahead and respond. If they’re not, then thank them for sharing with you and let them know you truly believe vaccination is the best thing for their child and that you hope the dialogue can be kept open at future visits.
If the above approach chafes your chaps, if it seems just plain wrong, that’s a perfectly valid feeling you’re having; but it certainly isn’t scientific.
Instead of reading self-congratulary after self-congratulatory article on how awful these non-vaccinators are, you’d be better served to read up on why parents make that choice. Better yet, try talking to a few of them. As a mom of a child with autism, I can tell you there are plenty of parents in that community who would be more than willing to talk to you about it. Step back from the moralistc thinking and consider all the psychological and social reasons parents might have to make this socially unpopular choice. What life experiences have they had that have led them down this path?
One thing I try to stress to my interns starting out in residency is that there’s a place for book knowledge but most of what you need to know about being a good doctor comes from experience. Your experience as you go along and learning from the experiences of the doctors teaching you who’ve been at it so much longer than you. If you’ve seen a child suffering from a vaccine preventable disease, you’re most likely eager to share that with your patients. But, you’re better off trying to find out about their experiences affecting this decision. Scientifically speaking.
One common misconception amongst the American public that upsets physicians is the idea that vaccines cause autism. How can so many people believe this stil?! It’s been scientifically disproven! Heck, it’s even been anecdotally disproven in the case of thimerosol. Let’s get rid of the exclamation points and ask that question for real. Why is it that people still believe all vaccines or MMR or vaccines containing thimerosol cause autism? Is it all due to that villain Dr. Wakefiled who published that now discredited study in the Lancet? Has he mesmerized these foolish parents? Or could there be a more logical explanation. Perhaps one explained by medicine?
Let’s set aside the vaccine facts for a minute here and consider some facts that are at the core of every family’s life who has a child on the autism spectrum:
1. Doctors do not know what causes autism
2. They’re pretty sure it’s a genetic predisposition that gets triggered but they don’t know what’s triggering it
3. But they’re pretty sure it must be mulptiple things because they can’t really find any one thing these kids have in common
4. Doctors have no cure for autism
5. Doctors don’t even have a very good treatment for it
6. Most PCP’s don’t know nearly as much about autism as an informed parent. As PCP’s, we’re generalists and it’s not something stressed in med school
7. The rate of autism keeps climbing and the truth of it is, scientifically speaking, we don’t really know why
Can you honestly tell me a parent in this situation would be irrational to question things that are dogma to modern medicine such as vaccines? Modern medicine has failed them. What they need from you is not a lecture or an anecdote of what can happen to unvaccinated kids. Assurance of the rarity of adverse events from vaccines (and yes, there are rare but quite serious effects at times) will not comfort them. They need their trust in medicine restored. And that begins with you, the PCP. I say begins because it is a process that can’t be rushed. You have to sit with them, sit with the uncertainty and anger and helplessness that comes with special needs parenting. You need to show them their child is your patient who you care about. That you see the challenges and the joys of their life. To show them that this isn’t about a battle for control. That you want what’s best for their child. And that you’re open to learning from them. That it really is a dialogue and not a lecture.
Only 1% of parents in Pennsylvania choose not to vaccinate their child, but the lessons we can learn from this issue will make us better doctors in a lot of ways. And better people for that matter.
Listen. Empathize. Validate. Assert. Repeat.
I often tell my kids: it’s okay to get angry. It’s not bad to feel angry. But when we get angry, we have to make good choices of what to do with that anger. I think we could all stand to hear that on a regular basis. So, my fellow physicians: it’s okay to get angry about vaccination. It’s not bad to feel angry. But you need to make good choices.
You’re a physician practicing evidence based medicine. So act like it.
“Professor Evans of the Presbyterian College, Carmarthen, actually saw a sin-eater about the year 1825, who was then living near Llanwenog, Cardiganshire. Abhorred by the superstitious villagers as a thing unclean, the sin-eater cut himself off from all social intercourse with his fellow creatures by reason of the life he had chosen; he lived as a rule in a remote place by himself, and those who chanced to meet him avoided him as they would a leper. This unfortunate was held to be the associate of evil spirits, and given to witchcraft, incantations and unholy practices; only when a death took place did they seek him out, and when his purpose was accomplished they burned the wooden bowl and platter from which he had eaten the food handed across, or placed on the corpse for his consumption.”
I gave a talk on PTSD in women to a room full of doctors today. I talked about incest and oral rape to a room full of doctors today. I started off my talk by telling them the next 45 minutes were going to be unpleasant and uncomfortable because discussing trauma, thinking about trauma, is an innately unpleasant, uncomfortable thing. And for the first five minutes or so they did look uncomfortable. Which made sense. And then they didn’t. They stopped looking uncomfortable and began to look the way they always do during a lecture. Some of them listened attentively and made eye contact. Some of them dozed off.
It went pretty much as lectures do. There were questions and comments afterward. About screening and medication and epidemiology.
I told them something else before the lecture started too. I told them I have PTSD and that I was talking to them about PTSD that day (not hypertension or diabetes or depression or all the hundred other diseases it would have been so easy to talk about) because I wanted to help all the survivors I’ve met along the way.
I have not told many doctors over the years that I have PTSD because the admission of the disease, quite unlike other diseases, is a confession of having lived something. In this case, something horrible and terrifying and evil. I’m not supposed to tell them what happened to me in medical school. Everyone who knows tells me so. We are a society that blames the victim and the medical world is no different. But these people who tell me this, these well meaning people who want to protect me, they don’t know how awful a thing it is to not tell.
What good is it to gain the whole world for the price of your soul? And a medical career, after all, is hardly the whole world.
The thing that keeps me from telling them what happened to me is not fear. I left fear behind the day I turned him in knowing he very well might kill my children, knowing very well bad men like him rarely go to jail for very long. The reason I don’t tell them is that they wouldn’t care, not enough anyway. They do not know evil as those of us who’ve lived it do. They do not have the darkness in them. When evil surfaces, we listen for a moment and tell her we feel so bad for her and tell her she’s so brave. And then we forget. Because anyone who can, will. And the reason we can is because of the sin eaters.
We swallow down the darkness for the rest of the world. It sits in us, contained in us, and you are safe.
It will never change. It is not patriarchy or capitalism or imperialism. It is evil, it is fallen Man.
I stood up there and I taught those doctors about the three stages of recovery from PTSD. I made them feel so good about the whole thing. These women will always have this chronic disease, they’ll never get justice for what happened to them, but they’ll be okay because they’ll break their silence and push through their fear and integrate the trauma experience into the story of their lives. They’ll be redeemed by learning acceptance. Not resignation, acceptance. Cue the music, fade out as the heroine smiles through her tears and heads out to conquer the world with her loving supportive man at her side.
I swallowed down the darkness for them. And there it sits.
I write this now not for those of you who will read this who do not know the darkness. You will never change. You can’t. You will forget this in a few minutes or a day. I write this for the sin eaters. So I might feel a little less alone for a moment before I head back to work, to the land of the those we protect who will never really know.
I was once raped by an educated man. He knew a lot about sociology, philosophy, and medicine. He was also a misogynist who harbored a secret internal hatred for women which he hid very well from all those around him. It wasn’t any more or less traumatic because he was so educated. It wasn’t any more or less shocking to me because we were both studying to be doctors at the time. It was what all trauma is: Brutal and Terrifying and Life changing. When you know you’re in a position so powerless that you might be killed, education and institutional prestige are of little concern. But in the days and months and years that follow, you cannot be truly healed until you find your voice and tell your story in whatever form it is that your story needs to be told. When our society priveleges the stories of certain survivors over others (what of men, prisoners, spousal rape survivors?) it keeps us from healing as quickly as we should. I am glad the voices of certain surivors from Ivy League schools are being heard to the extent they are (I don’t delude myself into thinking things are great for them), but we cannot ignore the voices of so many others. We have a story to tell too.
There’s been a lot of media coverage of the campus rape epidemic lately. Which is a good thing. There’s been an outcry against George Will’s op-ed piece questioning the validity of a lot of these rapes and talking about the privileges attached to being a rape survivor. Also a good thing. But if you read the majority of these articles, you’d think rape and a lack of appropriate administrative response by universities only occurred at elite schools. It wasn’t until I was about a dozen articles in that I even knew a medical school, WVSOM ( West Virginia School of Osteopathic Medicine), was one of the 55 schools under federal investigation for failing to handle reported rapes appropriately. The only reason it got a mention in the article was the fact it was a lesser known school and I got the impression that the point the writer was making was that it’s a lot more shocking that rape victims get treated badly at an Ivy League school than at one of those lesser known schools.
What’s the logic there? Do people in the Ivy League have higher moral standards than us commoners ? Is the upper class known for its devotion to women’s rights? More importantly, regardless of how surprised you are with the Ivy League’s mistreatment of sexual assualt victims (as opposed to those low brow schools where you just expect people to get raped and then harassed by the administration apparently), does that mean that the voices of the men and women at the other 45 schools don’t deserve to be heard as well? Is it any less an outrage when it happens to someone at a lowly osteopathic med school? It’s a lot of questions and I’m sure you can tell how I would answer them, but I’d really like to hear how these journalists would answer them. I know no one is truly unbiased, but can’t they at least pretend, make some kind of effort to appear to give a damn about the rest of us?
When I mentioned the news about WVSOM to some of my fellow residents, they were genuinely shocked. Not only could they not believe a medical school would treat a student who’d been raped poorly, they honest-to-goodness couldn’t fathom the idea that medical students would rape one another. They really just couldn’t comprehend the idea of one of our kind being a sexual predator. Am I the only one bothered that our culture is promoting these kinds of ideas?
It is shocking someone from the Ivy League would rape. It is shocking someone studying to become a doctor would rape. Okay, then who is it that we expect to rape? Apparently we expect uneducated people to rape. I guess the idea is that education is a humanzing process? But rape is, in essence, a very human act. One of the most human acts really. Rape is about anger and the need to control, something every level of society has demonstrated since civilization began. Is it really so difficult to think that Ivy League men, so used to privelege and control, might not have a need to control Ivy League women too? Do medical school admission commitees really get a feel for how angry an applicant is? Unless they’ve been convicted of a felony or misdemeanor, probably not. (And if you’ve ever been in an OR with an instrument-hurling surgeon, you might question if anger in and of itself is a generally discouraged trait in the world of medicine)
I don’t suppose we’ll ever be as upset with the death of innocent civilians overseas as we will be with the death of innocent civilians in America. Maybe we’ll always mourn more for caucasian, suburban school children shot than we do for african-american inner-city kids killed likewise. But, I hope for better days. And I work for better days. My name is Elizabeth Spaar and I was raped in medical school. Yes, our kind do indeed do that kind of thing. Of course, it was an osteopathic school, so maybe you’re unimpressed.