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.
I do not think that I have ever seen a case where the sentencing goal of protection of the public figured more predominantly. Anyone who sat through this trial would realize that this defendant is the worst nightmare of every child’s parent. The entirely credible and overwhelming evidence demonstrated that the defendant is a dangerous predatory sadist…
Hon Sean McLaughlin, sentencing of Jeremy Noyes
A package arrived today. A hoody. Oh, how I love a good hoody. Is there anything better? Cozy and comfy and flattering on people of all shapes and sizes. Maybe it’s because I grew up crushing on boys with long hair in hoodies and Vans, but hoodies hold a special place in my heart. Back to present day: the hoody that arrived was blazoned with Beast on the Bay. Because I have decided to run the Beast on the Bay again this year.
Regular readers may recall that in 2018, I ran the Beast as part of my ten year anniversary of my trauma. It inspired me to get into shape and do something that felt impossible. It also happened to be in Erie, where my trauma occurred and is sponsored by my old med school, who made the trauma significantly worse. I was not able to run the race in 2019 because the previous summer, in the best shape of my life, I had suddenly developed a mysterious autoimmune neurologic disorder a week before I was to run a different obstacle course race, the Spartan. Now, within this surreal time of quarantine, I’ve decided to do it again this September (if it’s not cancelled).
I had come to some new revelations on Easter Sunday. Not regarding God or Armageddon or resurrection. Regarding my immune system.
In order for me to explain, let’s rewind to June 2019.
I’d been in training for 14 months and was in peak form. My body fat percentage was its lowest ever. I could run a 9 minute mile. I was pumping out burpees like a champ. I felt amazing. On Sunday, my husband I went to a local Crossfit gym to do a class and practice rope climbing. I’d never climbed a rope in my life. I never even tried in gym class as a kid because I was convinced I couldn’t do it and would just embarrass myself. I knew I needed to climb one for the race coming up the following Saturday so we went and the owners gave me some tips and I did it! I was so damn proud of myself.
The next morning I woke up and felt sick: I was exhausted, my muscles ached and felt weak. It wasn’t the way I felt after a really brutal workout. It was the way I felt when I had the flu. I decided I better give into it and rest as much as possible but I’d been planning on working out leading up until a couple days before the race. I needed to get better quick, though , so I cancelled the workouts. By the time Friday came, I was still exhausted and I knew I needed to cancel the race. I was heartbroken. I’d worked so hard and it meant a lot to me. It was odd I was still feeling just as bad six days in, so on Saturday instead of going to the race, I went to Quest to get some bloodwork drawn.
Over the next few months I saw neurologists and rheumatologists. I had bloodwork, MRIs, EMGs, and EEGs. I began to piece together symptoms I’d been having in the months leading up to my exhaustion. Blistering on my lips I’d assumed were cold sores (they weren’t). Neuropathy in my arms and legs after showering. A tightening of my rib muscles during a run. At one point, my calves swelled and hardened during a run, forcing me to stop. My fine motor skills were off and I was having more of the involuntary muscle movements I’d gotten for years. I was losing my balance more often too.
None of the doctors ever arrived at a diagnosis and I was told to deal with it and be grateful it wasn’t something bad. I wasn’t. How could we know if it would get really bad or not if we didn’t know what it was? I had plenty of patients in the same boat. Vague autoimmune symptoms and slightly off labs but no clear clinical picture of a known disorder. They often found their way to my doorstep looking for help from medical marijuana (Which is smart because it helps both the symptoms and has immune modulating effect which can help longterm outcomes). I was now one of them.
I tried changing to a plant based ketogenic diet but it only seemed to make it worse (and was unpleasant as hell to eat). I tried forcing myself to exercise but it made it worse too. I would have a few days where I felt pretty good, but the symptoms always returned. That is, until November.
In late November, my husband moved out. Our marriage ended. And so did my symptoms. I hadn’t been expecting such a dramatic reaction on the part of my body, but there it was. Fatigue, pain, weakness, skin blistering, muscle jerking, neuropathy. Gone. My toxic marriage had been killing me. My body was sending me one last desperate message before it gave up the fight. And it worked.
What can make you more grateful for the movement of your body than losing it?
There has been a lot going on in my life since then. Divorce, buying a new house and moving in less than two weeks before Christmas, and the in and out of court of a high conflict divorce and custody battle. Finally as February came to a close I felt like things had settled down and I was ready to start working out again and go on a diet to shed the weight I’d gained since June. It went well for a couple weeks and then buh buh buh, quarantine! And it all went to pot. Like it did for all of you.
No more daycare. No more school. Time to homeschool 3 kids and take care of a preschooler. And now you have to take your medical practice and completely restructure it because you can’t do office visits anymore. And no one can help you because it’s a freaking quarantine. And did I mention the high conflict divorce I’m in? Yeah, those don’t improve with quarantine either.
And then we got sick. March 22nd, my four year old and I woke up with a fever, sore throat and cough. Exhausted, body aches, chills, no appetite. Then the other three kids got it. We didn’t qualify for COVID testing so I put us into complete isolation (actually considerably worse than regular quarantine life, believe it or not) and waited for it to pass. But it didn’t. The fever would sometimes for 24 or even 72 hours, but it always came back. We’re now on Day 33. I eventually coerced an urgent care into giving me a test despite not meeting criteria on Day 24 when our fevers went up higher than ever. The test came back negative but they told me false negatives were common and I should consider getting tested again. I consulted with my mentor, the best doctor I know. He said he thought it was COVID and a false negative. I agreed.
If you consider the other things in the differential diagnosis (cancer, rheumatoid arthritis, Epstein Barr virus, CMV, Lyme disease), none of them made as much sense as COVID.
And so, here we sit in isolation. Now, back to the Beast. I was in a lull of symptoms two weeks ago on Easter Sunday. I was sitting watching a local church service on my big screen TV while my kids ate their candy and watched their iPads, and a verse struck me.
A good man brings good things out of the good stored up in his heart, and an evil man brings evil things out of the evil stored up in his heart. For out of the abundance of the heart the mouth speaks.
And I realized my husband had ruined my relationship with God. Because that’s what abusive people do. They isolate you. From friends and family and, sometimes, if they’re really good at it, God. I realized how far from God I’d gotten, and how I couldn’t separate God from my husband and the harm he does. And I realized it was now time to stop. And I said hello to God again.
I realized something else that night as I stayed up late journaling about all my newfound epiphanies. I was ready to get in shape and lose weight again. But I needed something to focus on, a race. I thought of the Beast. But when I thought of it, my stomach dropped. I realized the thought of running it alone, without my husband, scared me. That I felt like his ghost would be haunting me the entire time. And most things that scare you, are the things most worth doing. And then it occurred to me. The timing of the onset of my autoimmune issues. I’ve always noted the cruel irony of it beginning right as I was to run an obstacle course race even harder than the Beast, that I’d trained for for so long. Right at my physical peak. My husband was going to run the Spartan with me just like he’d run the Beast with me. He jumped on the Beast wagontrain late in the game. He said he didn’t think I’d actually train and go through with it so he waited. Like it was such a big freaking honor to have him run it. He took something that was mine and made it his. He was jealous. And he was going to take the Spartan from me too. He had spent years complaining I was fat and had a flat butt but when I got in shape, he was so damn jealous, he did everything he could to undermine me. And he couldn’t let me have the Beast, my moment. I didn’t finish high in the Beast, mind you. I couldn’t do about a third of the obstacles. But I finished. And I was so damn proud. He acted proud too: proud of us, proud of his wife, of himself. His wife, not me. His possession that reflects on him. That was what he showed the world. A few weeks after we finished it, I put a “I Beat the Beast” bumper sticker on my car and he looked at it and said “You didn’t beat the beast. You didn’t finish all the obstacles.” And that, ladies and gentlemen, is what he shows his family. For out the abundance of the heart the mouth speaks. I stood up to him and told him I had finished and tried all the obstacles and that was a big accomplishment for me. He gave me a shitty look and walked off.
He took the Beast from me and my body wasn’t going to let him take the Spartan. Maybe that’s why it shut down. Maybe my heart called up my immune system and said, if he does it to her one more time I’m going to break. And my immune system said, ok, time for the Hail Mary. We will throw the switch and shut the whole plant down and give her some time to sit and think. And if she won’t walk away, we’ll leave her there sitting. And if she does, she’ll run it for her. And my heart blew my immune system a kiss and my immune system blushed. Maybe. Maybe it was a gift from my body.
So, I signed up for the Beast. And ordered a hoody. And the next day fruits and vegetable and water became a thing again at our house. Planning and cooking dinners because a nightly thing. And working out resumed for me and my kids too. Life was good. I was triumphant!
But then life happened. Our fever has taken up residence and work and homeschooling are getting harder instead of easier. Yada yada yada. I’m back down for the count. But I’m not cancelling the Beast. I am running it, come hell or high water or fever or economic collapse. Even if it takes me ten hours, I’m running it.
I cried a good bit during the Beast the last time I ran it. Cried for what Jeremy did to me, for what my school did to me, for what their mom having PTSD took from my kids, for all the other survivors I know who will never see justice like I did. I imagine I will cry this time too, for a whole other set of reasons.
My high conflict divorce has been nastier than ever this past week. We may soon go before the judge via teleconference (ya know, quarantine) and I am scared my husband will convince the judge he’s the guy out there bragging about his wife running the Beast, instead of who he really is, the guy denigrating his wife when she dared to be proud of herself. But this is not my first rodeo, dear reader. I have sat in court with a man who accused me of lies before and I have spoken the truth and justice prevailed. I will lasso the Beast again this time. And I will put on my hoody and take a run and thank my heart for being so damn good to me.
I have spent a lot of time reading about narcissism lately. I have my reasons I won’t go into here. An unexpected outcome of this research is the realization almost every politician in the Democratic primary is above average on the naricissim spectrum, some just as high as Trump. One in particular. The one who had to drop his bid in 1988 because he was exposed as a pathological liar and plagiarist. The one whose toxic masculinity led him to challenge someone to a fist fight recently. The one who has assured the billionaires “nothing will change.” And a relationship with a narcissist, my dear reader, only ends one of two ways: you wake up and leave or they suck the life out of you. The Democratic electorate has chosen the latter. It is narcissist versus narcissist in 2020 (it has been before, to be fair) . We will all lose no matter which one wins. If Biden wins, we are left with an America still under the conditions that created Trump and we will either get another Trump or …. Trump. Do you really think leaving the White House will make Trump go away? He has created a movement and they will follow him where he leads. The presidency, my dear reader, may become significantly less relevant. The question is, will the movement Bernie is driving remain intact to counter it?
I think of the people most affected by all this and I cry. My addiction patients in rural Pennsylvania, their children. They don’t even realize just how different much of America is living. And most of America doesn’t realize how they’re living. If they did, I’d like to think things would be different. But narcissists are very good at gaslighting and projecting and lying. Lying especially. Lots of lying. And if you’re a decent, feeling, empathetic human being, it is hard to resist. It is hard for for you to conceive that such a person could exist. Someone with no empathy and no remorse. Entirely self serving with nothing to limit what they’ll do to get it. Try to imagine. It should scare you. Terrify you.
I believe most Americans are decent people trying to get by in the face of a lot of hardship. I see it in my office everyday. Not just my most vulnerable patients, my middle class medical marijuana patients too. The cop with PTSD who had to retire because of it and now has no insurance or income to pay for the therapy he so badly needs. The single mom of an adult son with autism, trying to get services that aren’t there, trapped in her house. Chronic pain patients that were abruptly kicked off their pain meds once doctors started facing consequences for over-prescribing, not offered any help for withdrawal or to manage their pain. And I see the upper middle class patients who benefit from the system but have so much anxiety and depression, the money does them no good. And still they hold onto it tightly, unwilling to see letting some of it go would not only save so many struggling; it would save them too.
Greed is an illness. An ugly dark emptiness that cannot be filled and will not stop making you hunger for more. Like any addiction. Are the heads of the pharmaceutical companieds just projecting then? Turning so many into addicts so they can see themselves? And Trump, who will never have enough cheering angry supporters or enough money. He pulls the worst from us, feeding off negative emotions and chaos as narcissists do. Projecting onto America the darkness inside of him.
I do not mean for this post to sadden you or leave you feeling hopeless. Indeed, that is exactly what a narcissist wants. I want you to see that once you know you’re dealing with a narcissist, you begin your steps towards recovery. Leaving is not easy. They will try to suck you back in. They will love bomb you, bring you flowers and tell you how wonderful you are. But if you stay strong, it gets easier in time. And the best part? The thing narcissists hate most is someone who heals and is happy and strong. Our revenge would be a healthcare system that takes care of us, universal childcare, a Green New Deal, a living wage, an end to mass incarceration. Our revenge would be joy. Like an army of Care Bears shooting out beams of love and kindness and hope from our chests. They would keep trying, but with no one to reflect their image back to them, narcissists wither. Like Narcissist himself, when the reflecting pool they’re so addicted to dries up, so do they. And we, America, will have won.
America, by Allen Ginsburg
losing my religion: southern term for losing one’s temper, “flying off the handle,” going insane etc. Note that the R.E.M. song of this title has nothing to do with religion, despite the common misinterpretation of the phrase.
Than you and you are not me
The lengths that I will go to
The distance in your eyes
Oh no, I’ve said too much
I set it up
Than you and you are not me
The lengths that I will go to
The distance in your eyes
Oh no, I’ve said too much
I set it up
That’s me in the spotlight
Losing my religion
Trying to keep up with you
And I don’t know if I can do it
Oh no, I’ve said too much
I haven’t said enough
I thought that I heard you sing
I think I thought I saw you try
Of every waking hour
I’m choosing my confessions
Trying to keep an eye on you
Like a hurt lost and blinded fool, fool
Oh no, I’ve said too much
I set it up
The hint of the century
The slip that brought me
To my knees failed
What if all these fantasies
Come flailing around
Now I’ve said too much
I thought that I heard you sing
I think I thought I saw you try
That was just a dream
That’s me in the spotlight
Losing my religion
Trying to keep up with you
And I don’t know if I can do it
Oh no, I’ve said too much
I haven’t said enough
I thought that I heard you sing
I think I thought I saw you try
That was just a dream, just a dream, just a dream
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.
It was raining this morning as I headed out for my run. Ten years ago on this day, though, it was hot and sunny. I know this because I can remember the beads of sweat rolling down the back of my legs as I sat in my green minivan in that long, heavy, black Land’s End skirt I’d bought on clearance a few weeks before. My air conditioner was broken and the van churned out warm air as I sat staring down at my phone.
I’d programmed the phone number for the Pittsburgh field office of the FBI into it a couple months before under the name “Hope.” It was finally time to call. I knew he might kill me. Knew he might kill my two boys. Mies had just turned 4. Max was 2 1/2. I asked God to please protect them but told Him if something happened to them, I knew it just was what it had to be. I had to turn him in. I could never face my babies again if I didn’t. I didn’t want them to live in that kind of world. Abraham, I am feeling you, brother.
I operated purely through adrenaline at that time. Until he was arrested in August. And released on bail to a local podiatrist. And jailed again since he, ya know, had threatened to kill me and my kids and all. And then as I fought to stay in school as my med school slut shamed me and tried to get rid of me. Once the adrenaline stopped flowing continuously later that Fall, the real hell began. PTSD.
I wanted to give up but I somehow got to a place where I told myself, this isn’t it. Someday things will get better. You will watch your babies grow up. You will become a doctor and take care of your patients. You might even get married and have more babies. Maybe a daughter. Maybe. I fought off the hopelessness. I convinced myself there was possibility.
Here I am ten years later. With five beautiful kids (including a sassy-sweet daughter). With a handsome, devoted husband. With a practice of my own, complete with amazing patients I care about more than I knew I could. Healed of my PTSD. Having forgiven Jeremy and even Sylvia, the head of my med school, and all those professors who betrayed me. Training for a semi-impossible obstacle course race with my husband and a trainer, for goodness sake. A trainer. More than I dreamed possible.
I am so grateful to God my babies are alive. That I am alive. That I am a doctor. That I have the husband and kids I do.
I skipped work today and drove through the country to Deer Lakes park to go running. The rain and grey gave way to fluffy white clouds and sunshine in a beautiful blue sky. I held my hand out the sunroof as I drove. I felt the sweat run down my legs from my run as I drove.I sang along to Tequila! like a fool. I’m sure I looked and sounded ridiculous.
I pray the little girls he hurt find the peace I have. I pray he does too.
I am so grateful for today. I am alive, I am free. Thank you God.
I went into a patient room at my urgent care day job today to see a patient with chief complaint “sinus symptoms.” A routine visit, I was in and out in 3 minutes flat. It’s a very mechanical process when you’re seeing 50 a patients today, 95% of whom have one of ten diagnoses seen over and over. I walked in, though, and said, “I’m Dr. Spaar. I understand you’ve been having sinus symptoms,” as I always do. And I turned and got some hand sanitizer from the pump om the wall as I always do. And turned around to face the patient as I always do. And I’m sure he said something like, “Yeah it’s just all this pressure right here,” and he probably gestured to his face like patients always do when they present with a sinus infection. But I didn’t hear him.
Something about him, something about the look he gave me, reminded me so much of Jeremy. The look in his eyes. My stomach dropped. My body went numb. My heart started racing and things started closing in and going black. I quickly moved away from him to get the otoscope off the wall as he talked. I couldn’t look at him, at his eyes. And I needed a moment to panic without him seeing. I went about examining his ears and sinuses and lungs and asked the questions I was supposed to. I finished as quickly as I could and told him his diagnosis and plan and escaped the room. I did not look him in the eye.
And afterwards I found myself thinking, I wish I could have just said to him, “I’m sorry but I can’t look you in the eye because you remind me of my rapist. Nothing personal. I’m just fairly terrified right now.” It would have made me feel better, I think. And if rape survivors did this, wouldn’t the world be a better place? Why do we carry the burden alone? I think about what he did to me daily and yet there are so many people allowing themselves the comfort of pretending rape and child trafficking are not common. And it will never end as long as so many people remain so comfortable.
And maybe I’m wrong about this patient. Maybe he’s a rape survivor too. But rape is a systematic method of oppressing women and so I speak of women here as survivors and men as perpetrators and those conspiring in silence. Because statistics.
I rarely get triggered these days. It was a small blip in my day. But so many women are not as lucky as I am. They are living in the day in day out hell of PTSD. It is holding them back from who they are supposed to be. Creating a space for mediocre men to take the rightful place of exceptional women in many cases. Very few women in my situation would have graduated medical school, gotten a residency and graduated it as well. How many women have dropped out of college and grad school because of rape? How many have set aside ambitions and settled for a small life? And how many men have benefitted from this?
Perhaps the next time this happens I will tell the patient what I am feeling and why. And perhaps he will complain and I will be reprimanded. But I have learned long ago it is the keeping quiet that destroys your career, not the speaking out. Because it is the keeping quiet that takes your soul. There will always be another way forward even if your school or your job or your family or your husband reject you. Silence will eat you from the inside and take it all away. You will pretend at being alive until you can’t anymore.
And so perhaps next time I will tell the patient what I am feeling and why as I go about examining his sinuses and writing his prescription. Because a life of silence, however small, is not living.
The CBS national news is featuring a story today that I appeared in as a PANDAS expert. PANDAS is a medical condition affecting kids where their immune system attacks their brain when they get sick and gives them things like tics, OCD, anorexia, rage and cognitive impairment. It’s vital that awareness is raised because so many kids get misdiagnosed and don’t get the treatment they need.
Check it out here
End of PSA. Here’s the deal:
The story is a personal vindication for me. After my trauma, the story-slash-international-sex-scandal hit the AP wire and was featured in national and international news. It was not a flattering story for me. My name isn’t mentioned; I’m called simply, Noyes’s sex slave (should have read RAPE slave. there I fixed it for them). It led to a public shaming that contributed to my chronic PTSD settling for seven long years.
The head of my med school said I’d never be a doctor because of my moral failings. Not only am I a doctor (make that, an expert) but I am using my degree to fight the good fight. Quite the opposite of what she uses hers for.
Forgive them Lord for they know exactly what they do and do it anyway but you are a merciful God. Good way to flex your mercy muscles.
2017 is drawing to a close and here I am again, writing another reflective end of year post. I haven’t written in this blog in quite some time as I have a blog on my medical practice’s website now. This blog is really about trauma (although that’s not what I intended when I started it. Life’s funny that way I suppose). It’s about trauma in general and about one trauma in particular. The trauma Jeremy brought to me that cold snowy winter of 2008.
The trauma started January 2008. I began healing in January 2009. I got the subpoena written out by he himself to testify at his trial January 2011. I had my final healing from PTSD January 2015. And so…. January. January is coming again.
It will be ten years since The Ordeal. An anniversary. What are you supposed to give as a gift for your tenth anniversary? I looked it up and it said tin/aluminum for traditional and diamond jewelry for the modern gift tradition. It’s too bad I skipped our ninth anniversary because that one’s leather (get it? He was into BDSM. Leather. Get it? It’s ok. You can laugh. Or look at me awkwardly. You do you)
So what should I get to commemorate the occasion? A tin man? A Coke can? Perhaps an aluminum foil hat to block aliens from stealing his thoughts?
The thing I have in common with him is that he and I both think about The Ordeal everyday of our lives without fail. No one else does. Not consistently. Not without prompting.
My relationship with Jeremy has changed over time but I will always have one with him. From Stockholm Syndrome to fear to anger to forgiveness and then back and forth a few times. To compassion. Ok, sarcastic compassion at times, but compassion nonetheless.
My husband is reading a book about domestic violence right now and we ended up having a conversation last night about the importance of being able to confront an abuser and bring them to task.
“Did you ever do that with Jeremy,” he asked me
“No. I sent him to prison for the rest of his life. I really didn’t need to say anything”
“No but did you ever assert yourself with him verbally. In the courtroom maybe? I wasn’t there when you testified.”
“No… no. He was completely out of touch with reality. He said “I forgive you.” to me”
Eric continued on about the importance of this confrontation of the abuser and I interrupted him and shut him down. Just… no. No. This conversation wasn’t happening. I had no energy for it.
His point was that Jeremy needed that in order to come to terms with what he’d done. Bullies will never change if no one stands up to them. My point was that Jeremy is delusional and believes my sister and I orchestrated a grand conspiracy to frame him with the entire FBI backing us. He honest to Jesus Joseph and Mary believes that raping little girls is actually good for them, so… I’m really not seeing this asserting myself thing doing a whole lot. And quite frankly, if sitting staring at prison bars for 45 years doesn’t cause you to do a little soul searching, I’m pretty sure a sassy physician confronting you ain’t gonna do it either.
He continues the discussion of abusers as bullies and you need to stand up to bullies and all that and my mind wanders back to the courtroom. Back to the bedroom. Bitter, grey Erie. That uneasy feeling in my stomach. That fight or flight in my muscle fibers. In my eyes, always darting, scanning for danger. As it laid next to me.
There was a discussion at work today about what each of us would do if we won the lottery. Conversation drifts to the importance of buying land as it’s a limited resource and I find mySelf saying “or gold.” They begin discussing the merits of gold versus silver for price stability and my mind wanders back to the gold shop in Erie.
Jeremy was fixated on buying gold. He thought he could make money buying and selling it. He watched the gold markets obsessively. He never slept. I remember that. He was up all night on his computer. Barely slept. He watched the markets and talked to Alex in New ZeLand and researched evil.
He thought he was amazingly smart. Smart enough to outsmart the police. Smart
enough to make it rich buying and selling little gold bars. (Spoiler alert: he’s not)
At some point in The Ordeal he had me take my money and buy gold. I lived off student loans At the time so the money I was to live off of was dispersed in two
payments: one in August and one in January. He had me lend him this money I had set aside to live off of later in the year so he could buy gold. He would then sell it back and pay me back and keep the interest I suppose. I don’t remember the details. I remember very little about it. I remember driving to the bank near the Moe’s to withdraw the money (Welcome to Moe’s!)
I remember sitting in the Cheesecake Factory with my sisters that spring and mentioning the gold to them. I remember the look on my sister’s face and the way she spoke. She spoke to me the way you’d speak to someone holding a gun in their hand about to shoot. She looked horrified. She spoke calmly and slowly. She told me I needed to sell the gold back and put the money back in my savings account. I told her I would. I was glad she wasn’t angry. I was worried by the way she’d talked. Was I crazy, I wondered. She talked to me like I was crazy.
I remember insisting Jeremy give me the gold back in June. He said, the price of gold has gone down. You should wait and I’ll sell it and you won’t lose money. But I insisted and he complied. I don’t know what excuse I gave him. It worked. That’s all that matters.
I needed to get the money back because I was turning him in. Soon the government would seize his assets. I remember sitting there in the minivan with the broken air conditioning outside the gold shop in Erie. Sweating in my heavy black Land’s End skirt.
I still have that skirt. Still looks good. Damn good quality skirt.
Purple scrubs now, standing in urgent care a few lifetimes later. I walk away from the lottery discussion to work on notes. The memory of the Cheesecake Factory is unsettling. It fills me with shame. What decisions I made at that time of my trauma were mine and which were not? Maybe I would have done something crazy like buying up gold even if I hadn’t been in a situation where he controlled me through force.
If so, do I deserve to feel ashamed? No. I remind myself of this. I take a deep breath and let the shame go. Sort of. Hey, life’s a process. Don’t rush me.
So maybe I should get Jeremy something gold for our anniversary? No. Gold was a mistake. I’ll definitely stick with aluminum this time. Maybe foil for the rabbit ears on the prison TV so he can learn about PANDAS and the good fight.
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.