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.
My therapist and I realized the other day that although I’ve been in therapy with her off and on since 2014, we’ve never discussed my childhood. “Well,” she said, “I’m sure you’ve discussed it with the other therapists you’ve seen in the past.” “No,” I replied, “I haven’t. Never.” She asked. if I thought we should and I paused and took a deep breath and said, yes. My life has been a series of fires to put out for so long, this is the first time we’ve had time to get into it. She is clearly not a Freudian. And I have clearly been avoiding this. (My mother’s voice ringing loud in my head “someday you’ll grow up and go to therapy and talk about what a terrible mother I was,” making a pit in my stomach big enough to swallow me whole. The guilt. The shame. You don’t talk about the family to anyone outside the family.
Soon after this, someone tweeted about writing about your childhood and your parents’ reaction. It was a lighthearted tweet but some jackass replied that if one is going to write something negative about one’s parents, they should discuss it with their parents first as he had had an experience counter to this and was not okay with it. Here’s my response:
He has since deleted his comment as you can see.
I mean what I said and yet, I have held back on discussing certain things here. But I’m reminded of the quote:
So, fuck it.
I was reading my fave Viktor Frankl a couple of weeks ago. There’s a book newly translated to English of some talks he gave in 1946, shortly after leaving the camps. He writes about getting out and choosing to stay in Austria and the experience of having so many people there say, oh we had no idea what was going on in the camps. He calls it a deliberate not knowing and says it’s essential to the success of authoritarian regimes. Ordinary people must deliberately turn away from what is happening so that they don’t have to accept responsibility for it, don’t have the moral imperative to do something about it.
And as I was reading it, I thought of my mother. I thought of how much energy she and my father have put into not knowing for my entire life. You see, my greatest fear has always been that my children will turn out like me. They most definitely got some crap genes from me (nature) so I have to know that I am raising them differently than I was raised (nurture). And so, I have to remember what it was like and all the glaring red flags and cries for help and all that that they purposely ignored. Because I wouldn’t. I wouldn’t ignore my kids’ cries for help and red flags and all that.
I used to make excuses for them. It was the 1980s, it was rural Appalachia, not a place mental health was talked about. We didn’t have health insurance a lot of the time. But it’s just excuses. I had a lot of friends, of all classes and varieties, whose parents got them help (tried to anyway). The truth of it is, she didn’t want to be embarrassed and she didn’t want to be bothered. It’s messy, ya know? I remember writing a story in college about a girl who kills herself by slitting her wrists but makes sure to put newspapers down so it won’t make a mess for her mother to clean up. I had no idea the story was about me. I truly didn’t.
When you cut yourself everyday with razor blades, arms and ankles and shoulders and thighs, it is bloody. It wasn’t a thing back then. They still called it “self mutilation.” A friend of mine turned me and my boyfriend onto it and I loved it. I loved it for a lot of reasons, conscious and subconscious. I tried to hide it but apparently something happened that made it impossible to ignore. So they told me to stop. And she said, “You don’t need to see someone do you? You’re all right aren’t you?” And there was only one acceptable answer. “I’m fine.” Because we were always fine.
But my cuts were a reminder we weren’t actually fine. An intrusion into the beautiful little house where she kept her china dolls, four daughters, four dolls. And so my sisters would say that I needed to stop upsetting mom. And they would check me for cuts. And I would find new places to cut that they weren’t willing to look. And in time it blew over. She honestly probably completely forgot about it pretty quickly. They do that, ya know? People like her. They just dissociate out the bad memories that don’t fit their picture of the perfect little life. Just put the cut up doll in a new long sleeved dress and back in her place and everything’s fine again.
Fine. We’re fine. Everything’s fine.
We came home drunk, came home high, came home tripping balls. And they didn’t notice. I thought I was really good at faking them out. My other friends’ parents kept catching them but not me and my sister. We were so much better than them! Of course, we weren’t. Of course, if my kids came home like that I would know instantly. And have to deal with it. And admit things are not fine. And I would. But not her. Not them.
And if my four year old came to me asking for protection because her older sister was bullying her, I wouldn’t say “Toughen up. Life is hard,” and go about my day. If they locked her in a room with a static-y TV meant to terrify her at age 5 because she’d seen Poltergeist, if she was so scared she literally ripped the door off the hinges trying to escape, I would do something about that shit. For her sake and for theirs. I prefer not to raise any of my kids to be dickheads. But she loved her flying monkeys because they did the work for her.
I have to think about these things to remind myself I am a different mother than she was and that my kids won’t turn out like me. They’re already turning out differently. They don’t pretend everything is fine (not at my house anyway). They get mad and sad and worried and frustrated and bored. And they notice when I’m unhappy and ask me if I’m okay and what’s wrong and they try to cheer me up. These things happen daily, generally multiple times a day. And it occurs to me how many millions of time I have stuffed down sadness and anger and guilt and confusion and shame and just generally not being fine. And how many times I have stuffed down the urge to say, what’s wrong, Mommy? Because no matter what I said or how I acted, I knew things weren’t fine. I just didn’t know how to say it. For decades.
I look at my daughter and think, wow, she’s so perceptive. She spots manipulation or insincerity a mile away and she calls you on it. And it’s taken me a year and a half to realize I was that perceptive too. I just didn’t allow myself to admit it. Because I had to survive. Because children die without adults to take care of them.
I think about that study where they replaced infant monkey’s mothers with these cloth monkey dolls and the monkeys bonded to them, clung to them. Those infants turned out much better than the monkeys without one, or with the ones made of wire instead of cloth. And I wonder, did those monkeys grow up and go out in the world and eventually realize their mothers were just dolls, and not real mothers at all? Did the monkeys marry monkeys or dolls? If you’re used to a doll, I’d imagine marrying a real actual monkey wouldn’t feel right. Until you eventually realized being married to a doll isn’t normal at all, and really not a good idea.
WILL YOU MARRY ME? I THOUGHT YOU’D NEVER ASK!
I am 42 years old. And up until a few weeks ago, I would have told you I’m not an emotional person. A lot of statements like this “That movie had me crying and I’m not an emotional person.” “I’m not a crier but when she said that, I ended up bawling.” And so on and so forth. I didn’t think I was an emotional person because that’s what they told me. I remember being at the Pittsburgh International Airport and my mom was either leaving for her prolonged trip abroad or returning from it. I was 16 or 17. And my mom was crying and my sister was crying and so on and so forth. And I wasn’t. And it was, oh what’s wrong with her? Why isn’t she crying? And so when I was diagnosed with Asperger’s at the age of 22, it all made sense as to why she never seemed to express the appropriate emotions. And what it took me all these decades to realize, is that I knew it was all fake. The tears, the words they spoke, the situationally appropriate feelings they acted out. All a performance. A play we put on everyday for ourselves, for the world. I just couldn’t play along. Actual sadness, actual crying, I knew to keep hidden. Like a rabbit crouching down in the field, pressing its soft underbelly to the cool grass, hoping the wolf won’t rip its intestines out. Hoping it will pass by. Never, I mean never, expose your soft underbelly to them. Keep it locked away. Even from yourself.
It turns out, I’m actually really fucking emotional. I cried in front of patients in residency. That is not done. I cry on my way home from a hard shift with my addiction patients. I cry every time my son Max plays piano. I cry at movies, on almost every major holiday, thinking about the future, the past. I’m a crier. It’s taken me my entire life to 1) realize this and 2) let go of the shame around it. You’re not allowed to apologize for crying at my office. Humans are supposed to cry. And if someone feels safe enough to cry with me, I’m honored. Crying, real crying, not performance tears, it’s truly amazing. Every cry is a good cry.
Lena knows the difference between real tears and fake ones. She knows there’s a certain look he gives her that’s meant to make her feel bad for him and manipulate her into acting like she’ll miss him when he goes even though she won’t. And she knows how she’s supposed to act to make people happy. I think she knows she doesn’t need to do that with me. I hope. I’m actively working on it. Working on accepting emotions of all kinds from them and from me. On being honest with them when I’m sad or angry. On letting them know I’m there if they’re sad and that they won’t feel sad forever. Listening. Watching. Noticing. Remembering.
I will never understand how you can see your child’s body bloody and gashed and not want to do everything you can to help her. How you turn away from a four year old asking you for protection. How you tell your daughter she’s a crazy slut and a horrible mother and you’re giving her ex-husband money to get a lawyer and take her kids away. How you mention to her that her uncle googled “Elizabeth Fleming slut” and all kinds of things came up. Show her the tiny little AP wire article in the hometown paper about her turning in the pedophile and mentioning, accurate or not, details about her sex life, and talk about how humiliating it is and remind her how embarrassed her sisters are. And will never understand a man jealous of a ten year old. A man who belittles and degrades his children and his wife, plays them against one another, gaslights and lies. And do you know why?
Because they aren’t real people. They’re just cloth dolls pretending at being human. They’re badly behaved little sock monkeys and I merely, dear reader, relate the facts. Because everything was not fine. And every feeling and word and question and desire and lament and exaltation that I’ve swallowed down, that my children have swallowed down, that so many of us have swallowed down, deserves to come out whatever way we see fit. Y’all sock monkeys can go on deliberately not knowing, just work a little harder at it. The rest of us, we’re gonna be just fine.
One year ago today I woke up to my four year old climbing into bed with me, crying, with a barking cough and feeling like he was a million degrees, telling me his throat hurt. It took a minute for me to realize I felt the same way. By the next day, the whole household, all five of us, had a fever. I’d begun tracking all our temps twice daily on March 13th, when the schools shut down and the seriousness of this virus started really hitting me. On Sunday the 15th my oldest son had a low fever of 100.4 but felt fine. It went away a day later and I chalked it up to a sinus infection. I think he was probably patient zero at our house but it could have been a fluke. We’ll never know. It seems likely we got it before lockdown began. Once it had begun, we followed the rules very strictly (although I did go grocery shopping once and no one was masking back then).
When he came into my room, with his barking, croupy cough, I knew it was COVID. I just knew. COVID, as far as we knew, was still barely in Pittsburgh (we were wrong). It was new enough that new cases were reported on the news. There was one at the Oakmont Sheetz as I recall shortly after we got sick. I remember telling people I thought we had COVID and their skepticism. “I don’t know anyone with COVID,” they’d say, as though they were the Universe. “Well, it’s a pandemic, so someone has to have it. And a lot of us are going to get it by the time it’s done.” To be sick and face invalidation is difficult. It’s hard enough being sicker than you’ve ever felt while having four sick kids while working from your closet while in total isolation without that exacerbating things.
We were lucky enough to live somewhere with grocery delivery but the stores were often out of things and needed to substitute and that didn’t work with my kids. COVID took our appetite and I had to offer them whatever food they were willing to eat that day, which was usually very something very specific.
Our symptoms lasted a week but by day 7 we were feeling good. They were saying that around day 7 is where you either got better or crashed, requiring hospitalization. We remained fever free for 24 hours and I took us out of isolation (the guidelines back then were basically just 24 hours fever free). The best day, though, the fever came back. The other symptoms too. This happened over and over. Sick a week then feeling 100% better for a couple days and then sick again. A month in is when it got worse. We were feeling worse and worse each day. It felt like the virus was eating us from the inside out. All the kids did was sit around on their iPads. All I did was sit around on my phone. We didn’t go outside. Didn’t play. It was harder and harder to force ourselves to eat and drink. I began having episodes where I almost passed out. I told my 15 year old how to do the sternal rub if I passed out and didn’t wake back up right away. I was delirious a lot of the time but didn’t know it. If you’re in total isolation, who is there to tell you you’re not making sense?
It wasn’t possible to get a test in March of 2020. Beyond the fact I couldn’t leave my four year old with severe COVID diarrhea home with his 15 year old brother (no childcare in isolation), they wouldn’t give me on unless I had fever, cough and shortness of breath or a known contact with someone wit COVID. When we were getting worse in April, I went to an urgent care where I used to work and basically used doctor-to-doctor privilege to get one even thought I didn’t qualify. By then it was too late for the test to have been accurate (maybe if I wasn’t delirious I would have realized this? Maybe we didn’t even know that at that point. Who the hell knows). I tested negative but the doc told me he thought it was a false negative given my symptoms.
GOD HELP YOU IF YOU TELL PEOPLE YOU HAVE COVID AND HAVEN’T HAD A POSITIVE TEST. The art of medicine means little these days. People want a test. Few will truly believe you had COVID without it.
The exhaustion was severe and I had to keep working full time. Some days I would do my phone appointments lying down because I was too tired to hold my arms up. By the end of a workday I was so tired, I didn’t have the cognitive energy to watch a movie. I couldn’t follow the plot line. Sometimes I’d just lie on the couch and stare all evening. The fever and chills came and went and brought an awful malaise with them. My joints hurt (left shoulder in particular), no appetite, nausea, diarrhea, stomach cramps, brain fog, a headache that nothing relieved, trouble balancing, flushing, neuropathic pain, extreme muscle tension, back pain, anxiety, depression, mania, apathy, conjunctivitis, insomnia, sore throats, runny nose, hives, and I developed hypertension. No, really. All of that.
My daughter couldn’t really do any distance learning and I really couldn’t handle everything I was handling and also do all the things I was expected to for my special needs son distance learning. I remember calling my daughter’s teacher crying and telling her to fail if she needed to, because I was doing everything I could just to not have a mental breakdown.
I’d lost my receptionist and I couldn’t exactly hire and train another one from isolation, so I was seeing patients remotely and also answering phones and emails, scheduling patients, sending out registration papers etc.
I was also dealing with my soon-to-be-ex-husband having a mental breakdown of his own and financially supporting him. At one point I had to worry about proving we truly did have a fever and needed to be in isolation to a judge since it was interfering with our ongoing custody battle.
And at one point sewage backed up in our basement. It was all very Job-like.
I’m not one to take these things lying down, though.
No one knew long COVID was a thing, so as our fever dragged on, it was scary. I was talking to all the docs I knew and none of them were seeing a fever like that. I began taking our vitals several times a day and recording it. I logged our symptoms and what we’d done that day, eaten. Anything I could think of to figure it out because we didn’t have time to wait around for someone else to do it. I figured out early on the fever was the key to it. Every other symptom you see in other conditions. But a fever lasting this long? It was unique. The fact it came and went was unique. Th e fact it didn’t respond to Tylenol or NSAIDs was bizarre. The fact it didn’t follow a typical fever pattern (worst at night and better in the morning) didn’t make sense. And there was something else: our fevers were synchronized. I could take 10am vitals and we were all fine. Fifteen minutes later I would start feeling chilled and look at my little guy who was now flushed. I’d check our temps and all five of us now had a fever. When it passed, it passed in all of us. That is not normal.
And then one day, ten weeks in, before I’d been able to figure it out, our symptoms went away. The kids went into a PANDAS flare and I gave them all IVIG. They had severe side effects which leads me to think their immune systems had been thrown really off balance. We went to the ocean for a week. And we seemed to be back to ourselves.
Except we weren’t. Looking back on it now, now that we’re truly doing better, we still had symptoms. My one son was depressed and I assumed it was because life is pretty crappy in lockdown, but once his long COVID was treated, his mood improved right away. I had an incredibly label mood all summer. I remember commenting on it to my friend, saying I was exhausted from actively having to reign myself in from being too high or too low everyday. My youngest had developed idiopathic hives. My oldest and my youngest were having difficulty learning. Their teachers were concerned. Our appetites were still off. I still couldn’t sleep.
On October 5th (also a Sunday. What’s it with Sundays?) our symptoms came back in full force. It was bad enough I took my oldest son and I to get tested to see if we’d been reinfected. We weren’t. But the symptoms wouldn’t go away. This time, I was aware of my cognitive impairment and the exhaustion was harder to deal with. I wasn’t going to let COVID ruin my kids’ lives and I sure as well wasn’t going to let it keep me from working. That was not an option. I’m the breadwinner for four kids. If I don’t work, we’re homeless. So, I decided I was going to figure this out once and for all.
I returned to the fever pattern. By now I’d joined long COVID patient groups online and even a COVID survivor physician group. I found other patients with the same synchronization of symptoms. It appeared in a piece in the New York Times. And two of my patients who I suspected had had COVID in February and now had long COVID also had this synchronization of symptoms. This pattern eventually led me to figuring out that our symptoms were actually mast cell based and I was able to develop a long haul COVID treatment for us that has reduced our symptoms by 90-95%. We still get flares but they’re manageable.
I hope someday we’ll be symptom free but I don’t know if that’s realistic or not. If there’s one thing coronavirus has taught us it’s that we don’t know shit. This little virus shut down the world. It’s killed millions. It’s likely left millions with long COVID too. And we still don’t know how to treat it. Not really.
I was sad today, looking back on it. Those ten weeks were so awful. Its return in October. Not knowing if we’d ever get better. People don’t get how scary it was. Remember March 2020? Remember how scared we all were? We knew nothing about this virus except that it was horrible enough to shut down the entire world. A plague. Like a sci fi movie. My kids don’t have normal immune systems so something as simple as strep or flu can knock them down for years. I couldn’t find any other kids with PANDAS with COVID. It’s a small community. I was talking to every practitioner and parent I could and we were the only ones. We were the guinea pigs. After everything we’d been through and overcome with PANDAS and now this? I was terrified. It was traumatic.
And so, I cried today. But suffering and sickness are inherent to life, so I knew there was no point wallowing. There was a party to set up, after all. We had The 1st Annual Spaar-Chiang-Fleming Corona Roast tonight. We made a corona cake and had balloons and glow in the dark axes and a bubble machine (why not?). And we had a coronavirus shaped piñata that we beat the hell out of (at one point my son was worried I was going to break the baseball bat. Damn, it felt good beating the living hell out of that paper virus). We each wrote down something awful about this past year and then something we wished for this upcoming year. We burnt them to send their ashes up to the fairies and saints. And we burned the piñata. The coronavirus is just a pile of ashes now. Ashes to ashes, dust to dust.
I told my kids I’m proud of how well they’ve handled this awful year of sickness and lockdown. I am. And I told them there really will be better times ahead. One of my kids wish was very simple: to return to school. I don’t know if that will happen this year, but it will happen. As my daughter told me when I was upset the pizza we’d ordered for the party was 2 hours late: it’s okay. It’s not like the cake fell and smashed into the floor. The party of our new life was interrupted last March, but it’s only dreams deferred. The cake is still safe on the counter waiting for us. And it will taste that much more delicious when it’s finally time to eat it.
Spring was never waiting for us, girl
It ran one step ahead
As we followed in the dance
Between the parted pages and were pressed
In love’s hot, fevered iron
Like a striped pair of pants
MacArthur’s Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
I recall the yellow cotton dress
Foaming like a wave
On the ground around your knees
The birds, like tender babies in your hands
And the old men playing checkers by the trees
MacArthur Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
There will be another song for me
For I will sing it
There will be another dream for me
Someone will bring it
I will drink the wine while it is warm
And never let you catch me looking at the sun
And after all the loves of my life
After all the loves of my life
You’ll still be the one
I will take my life into my hands and I will use it
I will win the worship in their eyes and I will lose it
I will have the things that I desire
And my passion flow like rivers through the sky
And after all the loves of my life
Oh, after all the loves of my life
I’ll be thinking of you
And wondering why
MacArthur’s Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
The United States Senate chose to acquit Donald Trump today. Everyone in that room knew that Trump was guilty. On top of that, they were the target of his crime. He tried to kill them. His followers still want to kill them. Many of them were afraid for their lives and their families if they voted to convict. We’ve heard nothing from Pence in all of this even though the traitors constructed a gallows from which to hang him. He’s hiding out, they say, because he’s afraid of more MAGA terrorists hurting him and his family.
Hmm, now where I have heard this before? Maybe I’m thinking of everyone from the janitor on up to head foot ball coach and local God, Joe Paterno, at Penn State that did nothing about serial child rapist Jerry Sandusky because they were afraid they’d lose their jobs. Or maybe the dozens upon dozens upon dozens of people who knew exactly what Jeffrey Epstein was doing and did nothing because they were afraid.
Feeling you might be killed is trauma. Being put in a situation where you can either choose to do the right thing and possibly die or do the wrong thing and live is the hardest thing you will ever have to decide. But it’s not difficult. There’s nothing complicated about stopping a child rapist or convicting an ex-President who committed treason and is clearly planning to try it again. There are no murky shades of gray.
To be placed in this position is a tremendous gift. That moment defines you. Everything before and everything after in your life accumulates to far less than the weight this moment carries in deciding if you are a good person or not. Other people have to go their whole lives plugging away at doing the right things day in and out, and always wondering in the back of their minds if they’re a good person. Those of us placed in the hard position outlined above get a beautifully dramatic and swift moment that cements our place in the moral universe.
I had such a moment and faced the very real fear of my beautiful babies, two and four at the time, and I being killed. I chose the right thing. We weren’t killed, but it almost destroyed me. I went through hell for years afterwards but I never doubted I was a good person and that I’d made the right choice. Even if it hadn’t worked out and he had killed me, I would have known I made the right choice. As the Spanish revolutionary Dolores Ibarruri said, it’s better to die on your feet than live on your knees.
But but but they’re afraid for their families too! Ahhh. Sounds noble to want to protect your family, after all. Even people who are giving and understanding and kind, committed to religion and democracy and equality and all the other good things, falter when you bring their family into it. They justify their choosing what they know is wrong by saying they were protecting their family. Who could argue with that? Me I guess. Clearly I didn’t choose this path. We come to the story of Abraham then.
God tells Abraham to sacrifice his son Isaac. Abraham obeys but God spares Isaac at the last moment. And God is well pleased with Abraham. I have atheist friends who point to this story as proof the Judeo-Christian God is, well, bad. What kind of loving God would do such a thing? And why should we consider Abraham a good person if he was willing to kill his own son? In truth, there are people who think I’m a bad mother and a bad person to have put my own children’s lives at risk to stop a man from hurting other children. And, in truth, I know this to be true because some people in my life said this to me. It sounds like something you write a three page paper about in your first year philosophy class. The safety of your family versus the greater good for humanity. Or like that train. The one that will hit ten people if you do nothing and will only hit one person if you flip the switch. Do you flip the switch and actively kill someone, or do nothing and passively allow ten people to die? What is the moral thing to do (or not do)?
The moment I called to turn him in, I prayed. I sat in my green mini van on a hot June day. The air conditioner was broken and my vents were blowing warm air in my face as I sat there sweating in a long, black heavy skirt from Land’s End. I sat and I prayed and said, “God please don’t let my babies die and please don’t let me die because they need me. If we die, then I guess that was your will because I know I’m doing the right thing.” In other words, I pulled an Abraham.
Plenty of Atheists make this choice as well, for the record. It isn’t about trusting God specifically. It’s about loving your fellow human beings and everything else in the universe, in the collective oneness. It’s about putting that love above fear. It’s as simple as that. There is no fear in love. It’s not easy, but it’s simple.
What people who take the easy way out don’t understand is that it isn’t the easy choice at all. It’s easy for one moment and hard for the rest of your life. You spend the rest of your life trying to make it sound difficult but it was really very simple. If it was difficult, then there was more than one right choice. If it was difficult, you did the best anyone would have in the same situation. If it was difficult, you really had no other choice, realistically speaking. After all, you’re only human. It’s not fair for anyone to judge you.
Viktor Frankl, Holocaust survivor and neuropsychiatrist-philosopher, wrote that “life is never made unbearable by circumstances, but only by lack of meaning and purpose.” Forty-three senators chose to sell their souls today. It was a simple choice that cannot be bent and turned to look difficult. I would assume a lot of them are sociopaths without a conscience, but even sociopaths are human and have a knowing deep within them that they have done wrong. They’ve chosen the easy way and it will be with them always.
When I was a girl, maybe 10 or 11, I would daydream about my life as a grown up. I daydreamed a lot. I had my life figured out. I would be an international accountant (although it should be noted I was already a socialist by then so I’m not sure I really thought that part through) and live in a huge loft apartment in New York City (I really had no idea how expensive it was to rent in Manhattan at this point) and I would be unmarried and adopt two girls from China (I’ve birthed two half Chinese sons so I’ll consider this the one I came closest to following through on although I’ve been married not once but twice). More concretely, I dreamed of being able to go grocery shopping. I loved my weekly trips with my mother grocery shopping at Kroger, Riverside, Bilo, Shop N Save. Those were the days before Giant Eagle consumed every store in sight with her ruthless talons. I pictured the day I would be at the store on my own, picking out perfect round, firm bright orange oranges. Rolling that perfect orange in my hand, pressing on it, feeling the cool shiny skin. My visualization never got beyond this moment. But that moment contained all the possibility my life held. That orange was the world.
I had therapy today, zoom therapy. And we talked about how my life had settled down in so many ways and was going well. I told her I’ve been processing some things like the trauma of getting COVID last spring. And she said she hoped I was taking some time to exhale and enjoy this good moment in my life as well. I said yes I’ve been reading novels and working out and signed up to volunteer. And I said, honestly cleaning my house and doing laundry and cooking dinner are so enjoyable now. I said I thought it was because I’d been sick and exhausted and overwhelmed so long I felt grateful to have the energy for it, and grateful to finally really be making my house a home.
I came downstairs to cook dinner and when I opened the fridge I saw a bag of perfect, round, firm bright orange oranges I had bought at Giant Eagle yesterday on my weekly quarantine shopping trip. And I remembered that moment from my childhood. And I thought, it finally feels the way I pictured it feeling.
You see, my therapist had asked me how it is that as a single mom of four kids and a practice to run I seemed to have the energy for hobbies and all the plans I’d told her I was working on to take some classes and go on some trips alone and et cetera. And I said, well you know I was thinking the other day how much energy and time has been freed up by leaving my marriage because everything was always focused on anticipating his reaction to things. And she said, well you still have that. It’s true he is still in my life to some extent. It’s true I still spend some time trying to figure out how he’ll react to something I’ve done or not done. But I said, it’s so much less. Literally everything I did, I thought, what will He say? If I walk to work versus ride my bike versus drive. If I text a friend. If I wear this skirt or suggest we watch a movie or do an interview on a podcast for the practice. Every decision I made, trying to anticipate his reaction and how I would handle it and if I’d need to shield the kids from his reaction. And if I had the energy to deal with it. And the example I gave her right away was grocery shopping. I said, literally every item I picked up at the grocery store I would stop and try to figure out what his reaction would be. Every. Single. Thing. And she said, oh I had no idea it was that bad. That must have been exhausting. And I said, it was.
And so when I saw those oranges and was sent back to that moment in Riverside thirty years ago, shopping blissfuly with my mother, I knew why it was it finally felt that good to be a grown up out doing my own grocery shopping. Even in a mask during a pandemic. The oranges are mine to buy or not. Mine to eat or not. And when the juice runs sticky down my face, drops onto my kitchen floor, there will be no one there to make a bitchy comment that’s clearly a joke that I need to learn to take. And I will not have to weigh the option of not cleaning it up and getting lectured on how hard he works to clean the house (a lie of course) or cleaning it up and being accused of implying he’s not a good housekeeper (the truth of course). Because as much time as you spend trying to anticipate how someone like that will react to every choice you make all day and night, the reality is that there is no right choice. You are always wrong and they are always right. And if they say an orange is an apple, you learn to say, of course. Because who wants to stay up until 2 in the morning arguing that an orange is an orange?
I lived in Manhattan a little while when I was 23 in a tiny 300 square foot apartment on the Lower East Side and rode the F train to NYU each day to study the history and economies of Latin America. I had two half-Chinese sons. I was a card carrying member of the International Socialist Organization for a few months in college. For the most part, I got the details wrong of what it is to be a grown up. But I got the feeling right. It took me almost 42 years to get to that feeling but here I am. A fridge full of oranges and ready to go.
I’ve been downloading statements lately. Loan statements, bank statements, assets and liabilities. Which is better than last year this time when I was collecting up another kind of statement altogether, statements scribbled on the backs on envelopes and typed furiously into emails and texts. Statements that showed someone’s state of mind and fitness to guide sweet little souls through this fallen world and raise them up to be joyful and kind and all the other things we ought to want for our children, for all children. Phase 1: high conflict custody battle Phase 2: high conflict divorce.
You have to wait a year in Pennsylvania before you can divorce your husband if he doesn’t you to. It used to be two years but somewhere along the way someone decided you really only ought to be trapped in an unwanted marriage for 12 months instead of 24. Why not 15 or 6.5? Who knows. Who knows if the moon’s a balloon. Anyway, our one year was up in late September. I had filed the papers shortly before our family trip to Disney World (interesting way to experience Disney). We did not physically separate until November 22nd. But September is our official date of separation nonetheless.
The last step before the divorce is final is something called Equitable Distribution. Sounds kind of socialist, no? It’s actually quite capitalist, as it turns out. You have to figure out everything you as a couple had when you separated and everything you owed. You have to determine how much of your medical practice’s value is you and therefore not able to be allocated to both parties (beyond desks and computers and office kitchen microwaves, you must determine how much another doctor would pay to purchase your patient list. See? I told you this was all very capitalist). And then you have to figure out how to divide it up. We have a lot more debt than assets. Like, a lot. So it’s mainly seeing how much debt each of us pays off. We have a house that either one of has to buy off the other or we have to sell it. It’s not all that complicated for us. Not in the logistics anyway.
In other ways, it’s very complicated.
You may recall, dear reader, when I discussed the concept of a psychosocially complex patient (in this entry). My soon-to-be-ex-husband and I are having what I’d term a psychosocially complex divorce. High conflict divorce makes it sound like we’re screaming at each other across one of those long boardroom tables like an episode of LA Law where I’m a sketchy plastic surgeon who’s made a fortune selling a fat melting cream on infomercials and he’s the scorned husband fighting to get my fortune even though we all know what he really wants is his old wife back, the one who paid attention to him before she became big time news. That is not at all what our divorce is like.
Here is how it will go: my lawyer and I will gather my documents and come up with what we think is a fair proposal. The soon-to-be-ex-husband will counter with a nasty email to my lawyer and series of texts to me telling me divorcing him makes me a bad Christian, pleading with me to work this all out without involving lawyers, casually suggesting we just put this off 6 months before we finalize it, and a series of messages that alternate between contained rage covered with fake kindness and messages that are just openly rageful. As a bonus, there will likely be screaming eruptions in front of the kids at drop off and pick up. Oh, and let us not forget threats by him to take me for alimony. Because, ya know, it’s 1957. Maybe our divorce really would fit in on LA Law.
I’d like the divorce over with. It’s time. The kids and I had a return of our long haul COVID symptoms in October but have since recovered (I kind of discovered a cure for long haul COVID, but that’s another post altogether). I am finally feeling physically good for the first time in a very long time (I realize I’ve said that before but I really mean it this time). My practice was on the brink of collapse thanks to the whole worst-economic-downturn-since-the-Great-Depression thing but I got notice I’m getting a second PPP loan yesterday which means my practice will have a cushion to survive the next 6 months or so. My house is clean. My kids are doing chores and drinking water at dinner and taking showers without arguing with me. My laundry is kept up on. My office files are finally alphabetized. I’m reading novels and binge watching Hulu. Yeah, I’m feeling *that* good, guys. I’m starting a reasonable post-COVID exercise routine and eating healthy. I’m planning out running The Beast on the Bay in September and section hiking the Appalachian Trail (slowly. like, it will likely take me 20 years to complete kind of slowly). I’m volunteering with an Appalachian advocacy group working to bring green jobs to Appalachia.
I know, I know, I’ve said this before. And maybe it will all come crashing down again. But I’m hopeful. I’m finally standing on my own two feet and running my own home and my own practice. Taking care of my physical and mental health. Adulting like a champ. I feel like I will finally get to do some of the things I should have been doing in my twenties, the things well adjusted people do in their twenties. When you should be on your own for the first time like I am now. When you leave the nest and have some time to be yourself on your own before you get married and have kids and a consuming career and all that. And, no, I don’t mean I’m ditching my kids, quitting medicine and running off to work in a coffee shop near campus where I can pick up 21 year old guys and smoke weed and talk about … whatever Generation Z talks about. I mean I’m going to work on my house and take up hobbies and meet people within those various hobbies (hopefully), and do some solo traveling once the world opens back up. I’m going to settle into me. And enjoy me.
My bedroom is finally clutter free for the first time since we moved in. And for the first time in my life, actually. I have the furniture and the bedspread I picked out. There is a TV on the wall and a Peleton in the closet. A sealed fireplace with candles in it. Novels on my nightstand. Windows with a view of my oak tree lined All American street. I do not allow my soon-to-be-ex-husband to pick the kids up or drop them off here. It is our space and he is not allowed, not even on the street in front I see so clearly from my bedroom window. It makes him so damn angry. Angry because this is his way: to get an inch from you and stretch it into a mile. But I will hold the line, airtight boundaries. There is just too much to lose. Because there is nothing equitable about divorcing a narcissist. And if you think there is, you, my darling, will never get away and find your way to a beautiful bed in a wonderful old house in a quaint neighborhood in a state that knows we all need 12 months to be sure we’ve had a glimpse of the wonderful life that awaits us when we are finally divorced.
who knows if the moon’s
a balloon,coming out of a keen city
in the sky–filled with pretty people?
( and if you and I shouldget into it,if they
should take me and take you into their balloon,
we’d go up higher with all the pretty peoplethan houses and steeples and clouds:
away and away sailing into a keen
city which nobody’s ever visited,wherealways
in love and flowers pick themselves.
So this is love, mmm
So this is love
So this is what makes life divine
I’m all aglow, mmm
And now I know (and now I know)
The key to all heaven is mine My heart has wings, mmm
And I can fly
I’ll touch every star in the sky
So this is the miracle
That I’ve been dreaming of
So this is love
The Third Law of Thermodynamics states that entropy is always increasing. That means the world tends toward chaos and you have to apply energy to the system to straighten it back out. The way my chemistry explained it is this: your house is always getting messy unless you intervene and clean it up.
Chaos runs counter to flow. This is why, for instance, a cluttered and messy room has a negative effect on our mood and a clean and tidy room feels good. It’s why it’s so important to give kids a consistent routine. It’s why part of healing from addiction and mental health problems and abuse involves calming down the drama. It’s why narcissists love causing chaos.
Creativity consists of taking something seemingly chaotic and making sense of it. So, sometimes we induce a little chaos in the creative process. And that’s okay. In the end, we are reducing the level of entropy in the system.
Trauma is chaos and requires a helluva lotta energy to be applied to return the system to balance.
The Judeo-Christian story of Adam and Eve (as well as the similar versions of it we see cross culturally) about the Fall of Man, is about the introduction of chaos into the world. The garden of Eden was perfect. It was in perfect balance, perfect flow, perfect order. The Laws of Thermodynamics were not necessary. Adam and Eve couldn’t even conceive of entropy. Until they ate that damn apple. Boom. Cosmic chaos. Before that, they were in a state of perfect harmony with God, a constant state of being in the flow.
This onset of chaos and disconnection from flow was the Original Sin. And that is what all sin is: separation from the flow due to induction of chaos. It can come both from causing chaos but also from failing to apply the necessary energy to the system or blocking someone else from doing so. It disconnects both the person committing the act and anyone it ends up affecting.
Disconnection from flow is not only the effect of sin, it is also the cause. Entropy is always increasing. It is easy, therefore, for individuals and larger groups to get into a downward spiral of separation from flow. When we speak of an individual hitting rock bottom, it is often the only way to break this spiral and gain the strength to rally and begin to apply the massive energy needed at that point to return order. Luckily, there is also an upward spiral. With each act drawing us closer to the flow we receive greater strength and hunger for flow.
We see this not only in choices people make, such as battling addiction or all the other self destructive things we do as humans. We also see it in medicine when restoring homeostasis to the body. An upward spiral is always my goal in treating patients. Energy must be applied to keep the upward movement going but it gets easier over time unless another strong element of chaos is introduced again (which is of course common).
For instance, a patient with autoimmune disorders commonly develop severe fatigue and pain. This leads to them being less physically active, doing less of the things they love, getting out less, seeing other people less. All of this then contributes to a greater likelihood of relying on unhealthy coping mechanisms, depression, negative thoughts, and disconnection and loneliness, a sense of isolation. They also often have negative, traumatic experiences with the medical community and others. You’ve now got a whole new set of problems. Once you are able to start effectively treating the body and reduce the core symptoms, you can then reverse the spiral and begin to work on the other effects.
This brings us, naturally, to the topic of Ghostbusters. Ghostbusters 2 specifically. Remember that one? In it, negative energy has created a river of pink slime under the city of New York powered by negative emotions. It threatens to ruin New York. The answer? They must get New Yorkers to stop being angry and come together in love. (to accomplish this they animate the Statue of Liberty to walk through the city and everyone holds hands and sings along to the song they’re blasting from loud speakers “Put a Little Love in Your heart. It works).
That’s what we need now. Our country has spun out into such a state of entropy and separation from flow, only a massive amount of energy in the form of love will save us. Not, in the words of Martin Luther King, “a sentimental something that we talk about… not merely an emotional something.” The love that is flow. The oneness that we are all connected by. The all encompassing perfect love so many of us don’t feel we deserve, that so many are afraid of, that so many of us violently reject. The ultimate vulnerability, the ultimate act of bravery for so many us who have fallen away from the flow.
We are all born so completely in touch with the flow. It comes from the womb. From our mother’s womb, from Mother Earth too. The power the earth holds, then, is the ultimate power. And this is why Sir Francis Bacon decided he needed to take her in hand and conquer her. And this is why patriarchy takes women in hand to conquer us. And why imperialists and racists take people of color in hand. So great is their fear of their mother’s love, of their need for it, of the fact they feel they will never have it.
There is a reason we joke about therapy and the phrase “Tell me about your mother.” Violent men almost universally feel, true or not, unloved by their mothers. This is true too on a global, historic scale. They seek to conquer and destroy the womb. The source of life, the source of flow.
Can we accept the love our mother has for us? Can we wrap our arms around one another before it’s too late? Step on the serpent’s head once and for all and come home?
There is a fine line between madness and genius, or at least that’s what they say. If you look at history, a fairly large share of artists and thinkers have been thought to have had what we now call Bipolar Disorder. And if you’ve ever been manic, then you know. You are tapped into the oneness of the universe, the spirit, the magic, the flow. And the music and writing or painting you do comes from the flow. It is from you but it is from something bigger too. One reason it can be hard to get patients with Bipolar Disorder to take their medication is that being overmedicated can take away not only the mania, but the access to the flow as well. And that, my friend, is an awful feeling. Like being somewhere between alive and not. Because it is this flow that is at the core of every religion the world has ever seen. At the core of art and philosophy. It is the meaning of life.
Plenty of people who do not suffer mental illness tap into the flow too. But we, as a society, have fewer and fewer people able to. And that is dangerous. It is at the core of what is happening in our country now. And what has been happening in this world since 1492, the advent of the Modern Era. People far from the flow grow bitter and unloving and resentful of those still in touch with it. People far from the flow are not quite alive.
In the flow you see connections. You see that everything and everyone is connected. You see that everything is one. And you see that we are all loved. You see that you love everyone. And that everyone loves you; you are lovable. And that can be terrifying. But when you’re in the flow, in that moment and place, it’s not.
There are people in recent times so clearly in the flow so much. Cornell West, the late Howard Zinn, Martin Luther King, Malcom X (El Haj Malik El Shabbaz), Bernie, AOC, Robert Benigni, Victor Frankl, Audre Lorde, Allen Ginsburg, . I clearly follow social justice a lot more than art or music. If you’ve ever gotten a chance to be around these people so much in the flow, you felt it. I felt it when I met Howard Zinnia’s on my birthday in 2003. An energy coming from him, a calm and a peace that came over you in his presence. A feeling of being loved.
If you yourself have not been in the flow, or not recently, I imagine you would not pick up on it. Or you would, but it would be too much to take and you’d block it out. And block them and what they create out. You might ignore it, you might hate it. I tend to think the most destructive people in our society are the ones that have a sense of the flow moreso than those who are just indifferent. There is a knowing somewhere inside of them that they are being denied the flow. But the only one denying it is they themselves. As I said, it can be terrifying.
If you look at the extraordinary cure rate of guided psychedelic therapy with MDMA for conditions like PTSD and depression, you see it is because psychedelics tap you into the flow. But when you hear about someone who was not with a guide, that’s when you hear horror stories of bad trips. And so when we refer to these past few years as a bad dream, a bad trip, we’re exactly right. Our society is being run by people on a bad trip that never ends and they are projecting that out onto us.
What else explains a group of people perpetuating global warming at full steam when it clearly will mean the end of humanity?
While mental illness like Bipolar Disorder can bring you closer to the flow, other forms of mental illness are a sign of alienation from it. The most obvious being narcissism. If you’ve lived with a narcissist, you know what gaslighting is. If you are living in Trump’s America you know too (whether you know to call it that or not). Gaslighting seeks to throw you into a chaos far from the flow. Narcissists seek to make you feel unlovable. Because they are convince that they are. And if you try to prove to them they are loved and lovable, you will regret it.
PTSD at its core is removal from the flow. Trauma is the experience of having been abandoned but everyone in your life, by God, by yourself, by the universe. It is the ultimate disconnection and sense of being unlovable, and of the world being a place devoid of love. It is a world between life and death. The only way out is to face your ineffaceable trauma memories. And to accept that you aren’t alone. That you are connected and loved. And that is why psychedelics cure PTSD. And that is why people traumatize one another. People far from the flow and resentful and angry about it, seek to punish those in it and to pull them out to be in that same in between chaotic world they reside in. And that is why healing and thriving and being joyful and loving enrages them more than anything. To see you’re back in the flow is something they cannot stand. They cannot get back to the flow and they don’t realize it is only them keeping them from it.
We are all born in touch with the flow. You see it clearly in kids. You see the lack of it so clearly in kids who’ve been badly abused. Even if you can’t describe it, you feel it. So many of us are in the flow less and less and less as we get older. And if we are not loved and nurtured the way we deserve to be, we go so much further away from it. And some of us are aware of it enough to get depressed or addicted or tuned out on social media. And some of us get angry. We know that there must be a meaning to life but it always seems out of reach for us.
When people live in survival mode, they are rarely in the flow. Only in moments of respite, which some get and some just don’t. And if you do get those moments, it may strengthen you or it may make the times of survival unbearable.
Those in power seek to take us from flow by putting us in survival mode though poverty, addiction, rape and sexual violence, racism, war, consumerism, and constant fear. They do all they can to keep us from taking in the things people make in the flow, to keep us from creation and focused on consumption, to divide us from one another with the construct of scarcity and otherness, they do evil in the name of God to keep us from that something higher. They keep us uneducated and afraid and traumatized. And they gaslight us. It’s what narcissists in relationships do and it’s what Trump and all those he is the culmination of do on a much larger scale.
Someone cut off from the flow cannot begin to address their privilege and the systems of oppression that are affecting other people or even themselves. Karen is far from the flow. So terrified to face not only her own racism but all the ways she is oppressed too. Because she is afraid of love, of the vulnerability that comes when you are in the flow. To hide outside, to hide in her own shame and do all she can to create shame in others is what is comfortable to her.
And someone not in the flow cannot begin to admit what we have done to our Mother Earth and accept the love she for us and feel the love we have for her. We cannot bear to admit we need her nurturing, cannot bear to accept that we deserve it and she is offering it. After everything we’ve done to her, her arms are still open wide. There is no choice but to destroy her.
The Modern Era began in 1492 and was driven by imperialism, colonialism, slavery, conquest, genocide. But that is not what started it. And if you look at where it started you realize it is not only those institutions we now are beginning to admit are reprehensible, but the ones we still hold in high esteem, that are at the core of us. I am referring to other institutions created at that time such as modern medicine, science and the university system. And don’t forget democracy, capitalism and Protestantism.
You see, it all started with this idea the people would come to be known as scientists came up with. A group of European men who were clearly not in the flow and very, very pissed off about it. They pulled off the greatest act of narcissism in human history. They said, hey the earth isn’t an organic being. It’s a machine that Man can come to full understand and fully conquer. That simple, seemingly harmless idea, is how we wound up where we are today. That is where Donald Trump was born.
They began deep mining for the first time. Before that, it was taboo because it was essentially penetrating your mother. Who would be okay with that? But now, anything was fair game.
Do you think there were no healers before modern medicine? That people just languished and died. That is what modern medicine would have us believe. In truth, there were healers (largely female) and midwives (all female) who were trusted and valued by their communities. The idea of a man coming in and delivering babies was insane. And they were not cool with that. Just as the rest of the world was colonized through violence and conquest, so too was medicine. They called in the witch hunts and it killed a million European women.
The early, small scale witch hunts in Europe were carried out by the Catholic Church during the Inquisition. That’s probably the extent of what you were taught (just forget about the Salem witch trials for now, that’s a whole other thing. We can go into that in another blog post). The vast majority of the witch hunts occurred a couple hundred years later and it was carried out by the Protestants. Women’s knowledge of healing became denigrated as “old wives tales” and one by one they disappeared or went into hiding.
Protestantism itself took Europeans further from nature and their way of connecting to the flow through traditional beliefs. Catholicism, as my evangelical friends in the Bible Belt growing up liked to point out to me, had retained a lot of the old beliefs at the time and still does to a small extent today. The Celts had simply turned Goddess Brigid into St. Brigid. The underlying idea seen across pre-Modern spirituality of the importance of both female and male energy brought devotion to Mary. The title of Theotokos in Orthodox Christianity, God bearer. The recognition of the power of her womb, of all women’s wombs, of creation, paralleling the mother of all of us, Mother Earth. The recognition of the power of ritual and the elements and senses. The mysteries you accept, knowing you can never truly understand. The transubstantiation of the bread and wine into the literal body and blood. His body up on the crucifix reminding us of our oneness with him. The elite hierarchy of the Church that developed once it was transformed from a communal, radical religious group into the religion of the Holy Roman Empire was never of the flow, but the people took that imposed religion and made it theirs, returned it to what it was in its beginnings. A religion of loving everyone and everything and acknowledging the oneness, even with the Judeo-Christian God himself. A religion where, at the very core, was the idea that God loves all of us no matter what awful things we do. And He wants us to do the same.
But I digress.
Science is the dogma of our times. And Sir Francis Bacon is its messiah. Do you know how Bacon explained the exalted Scientific Method he came up with? Hypothesis, experiment, conclusion. The man made, systematic creation of objective knowledge. He was inspired by his time spent as an inquisitor of witches. He said we must torture the earth as we do a witch to extract her secrets. That, my friends, is the heart of the institution of science. He could not have been further from the flow. Using violence and trauma to try to separate us all from it, to try to destroy it.
The consumption of indigenous bodies, African bodies, female European bodies. Imperialism, slavery, science.
And so we have arrived at the only possible conclusion to this era. We stand at the rpecidpice: either those of us in touch with flow will be able to usher in a new, better era, or the narcissists will succeed and destroy us all. But they won’t destroy the flow. They can’t. They will simply return us all to it and it will manifest in another way.
The flow speaks to us; we speak to ourselves. One thing traditional healers know that modern medicine denies is that illness has a message for us. And that message is always a return to the flow. A signpost to us that we have taken a wrong turn in our choices, whether they be personal or societal. We see today a tremendous surge in autoimmune disorders in both adults and in our kids. On the literal level, it is due to the choices we have made that have altered our immune systems and our very DNA: avoiding germs, no longer living in contact with animals, an unnatural diet, the use of pesticides and a million chemicals, coal power plant emissions, and living stressed and disconnected lives. It is our bodies crying out to save our souls. If only we would listen. Modern medicine fights this idea with every ounce of its being. Healers and patients who know this truth have to fight to make even small progress for its acceptance into mainstream medicine. This denial by modern medicine not only inhibits patients’ ability to heal, it traumatizes them. It drives them to avoid getting care, it drives them from the flow. People with autoimmune disorders and their families go from thriving to surviving. Further and further from the flow.
I have long sought to figure out what the autism epidemic is telling us. I have autism as do my two oldest kids. I have seen the ugliness of autism and the beauty. Those of us who have, oftentimes struggle to explain this to a culture that more and more presents the bogus idea of embracing autism as a form of neurodiversity. We do celebrate our kids with autism (and our selves if we are on the spectrum) and the good we see in it, but we cannot deny the bad: anxiety, obsessions, violent meltdowns, sensory issues, not to mention all the GI, immune and other neuralgic issues found in those with autism, and their higher risk for certain immune conditions and neurodegenerative diseases as we get older. Mainstream medicine, incredibly, has denied the existence of the autism epidemic. They have denied the immune, GI and neurologic causes of it and only are beginning to recognize it now after decades of physicians and parents fighting. What is autism telling us? Sensuality, our senses, are part of how we access the flow. That is why you see the elimination of the sensual aspects of Christian worship by the Protestants. That is why you see sexuality repressed and controlled so much with the advent of the modern era. A core feature of autism is sensory dysregulation. And so it is when you have autism you are at times so much more in the flow the most and at other times so far away it is excruciating. Hour by hour, minute by minute. Social disconnection is another feature. Part of the disconnection is this fluctuation with flow but part of it is the message we are sending ourselves with this disorder. We need to be more connected. And so, we show ourselves the ultimate disconnection. (So too with the coronavirus). We see clearly in autism too what is true of all disease, that it is the interaction of the all the body systems the create it. And that all the things we have changed about our world that cause the dysregulation of the body that manifests this way.
We are crying out. If only we would listen.
The trauma and suffering so many are going through now, have gone through for centuries, is not okay. But Victor Frankl taught us human suffering can be transformed if we can bring meaning to it, choose to bring something good from it. And so, in the end, no matter what happens, the flow will go on, and we with it. I just sure as hell hope that form is a better world with all of us still in it. Just spending a lot more time in the flow in between our time in our bodies with all their senses and sadness and joy. With one another. Alive.
“You can do anything for 20 seconds!” That’s what the Peloton instructor said as we climbed up a steep virtual hill in my closet at my blue house in Oakmont at 7:00am on a Friday. And all of a sudden I was back in the gym in Verona. 2018. 6:00am on a Thursday morning, getting in a workout before heading up to my Grove City office for a long day of seeing patients. Staring into my reflection in the glass of the front window the treadmills all faced, telling myself “if you survived six months of Jeremy Noyes, you can run a little longer, girl. You can survive anything.”
Now, careful what you say to yourself. Because the universe is listening and if you say, I can survive anything, sometimes the universe goes ahead and sees if it’s true.
I’ve been through a lot since then and I’ve witnessed a lot since then. And I was right: I did survive. I survived a lot more than 20 seconds and a lot worse than a sprint on a squeaky treadmill at a gym that hadn’t been renovated since 1988 and refused to hire a window washer, resulting in a lot of funky spiders peering in at you from their cozy webs outside the windows. But now I’ve reached a strange place. It’s the place beyond survival. A place where you are not desperately trying to get through to the next day. A place where your solace is not picturing the far off someday. I have reached the land of milk and honey.
I’ll say this for the universe: it handed me the land of milk and honey within the worst moment in modern human history. We are essentially living through the Spanish flu, the Great Depression, the 1960s, Germany c. 1939 and a couple dystopian novels all at once. If you’re middle class, go get some weed and take a deep breath and you’ll be okay. But if you’re one of the 94 million Americans living at or near the poverty line, you may not survive this.
I take care of them and I see it and I watch helpless. I do what I can. But I know that almost no one in my life knows they exist. Not really. They were barely surviving before. Now? I just don’t know. All I know is things need to change. And if it’s ugly, then it had to be ugly. Poverty is violence. Our criminal justice system is violence. Our healthcare system is violence. That white rich couple in St. Louis are merely a more tangible representation, guarding their gated community with their big guns.
But I digress.
Back to the irony.
In the midst of all this, I find myself at a new chapter in my life. A chapter I’ve dreamed of for decades but am not entirely sure how to handle now that it’s here. My life is no longer about survival and getting by and fighting.
Now let me knock on wood. OK here goes.
My kids’ health is not perfect but we are over the worst of it and I spend very little time being their doctor now and almost all of it being their mom instead. My medical practice has finally gotten to a good point where I am not afraid month to month if I will make it or not. Where I don’t have to agree to take any patient who calls up and wants seen that day or that weekend or at 2am standing on my head yodeling. I no longer need to work 90 hours a week. I am, after 16 years of more sacrifice than most, finally one of those doctors who can work 4 or 4 1/2 days a week. I could work more and make more, but I don’t have to and I’m not going to, damn it.
My mental health is strong. I have good people in my life with good boundaries. I have moved past the addiction to the delicious chemicals that flood your brain when you are in a volatile relationship. I have a beautiful home that is all mine. My mysterious autoimmune disease is gone and I am training at full speed and loving it. I am working on a plan to section hike the Appalachian Trail. And it’s actually going to happen. I read novels. I ride my Peleton. I’m building a beautiful patio and getting a tiki hut to go over my hot tub. MY FREAKING HOT TUB. I have arrived.
Now, I fully own my class and race privilege. But it’s not the hot tub that is the thing that matters (but it’s pretty darn sweet). It’s the freedom from toxic relationships with other people and with myself. It’s the ability to say, being a workaholic is unhealthy and unfair to me and my kids. The ability to say I deserve to be happy and free. The ability to hold boundaries. The ability to get overwhelmed and pause and take a breath and figure it out without running into something I will regret, something that keeps me in survival mode longer. The ability to sit in pain and uncertainty. The ability to be present, to be fully and wholly alive, the joy and the pain, the exhilaration and boredom. The ability to see the infinite unknown possibilities and be at peace.
The custody battle that was my last great entanglement with the man I loved is now done. This comes at the same time as my practice’s stabilization. The same time my little ones will now be with their dad longer, freeing up more time for me. I feel light. I feel the possibility, and the possibility is here. It’s now. Finally.
I feel like myself. Fully myself.
Life is a journey and I realize I’m not boarding the Good Ship Lollipop. There will be tough times. There *are* tough times right now. I spend a lot of time feeling the things and thinking the thoughts we all ought to be with the way things are. But it’s different now. And I truly believe my personal life hit its last rock bottom this past spring and it is uphill from here.
PTSD tries to take possibility from you. It places your body in a chronic state of fight or fight. Also knows as survival mode. Possibility is a far off, uncertain, unlikely thing when you are in that place between life and death. When you have PTSD as a result of rape and abuse, it will get reinforced over and over again by our patriarchal, imperialist, violent culture. Every time you go to take a step forward, people will try to shove you back down. They will tell you to stop playing the victim, call you crazy, call you a slut, say you wanted it, question why you didn’t fight back the way they think you should have, say you’re exaggerating, call you vindictive towards the poor innocent man you’re trying to destroy. In short, they will do everything they can to keep you in survival mode.
What they don’t know is that you are a badass warrior. What they don’t know is they’re the ones who will never be truly alive. You will.
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.