Tag Archives: family

That’s me in the corner, that’s me in the spotlight (or, the fault in our star)

03 Tuesday Mar 2020

Posted by in christianity, empathy, Evil, love, medicine, romance, Sin, Uncategorized

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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.

Oh, life is bigger
It’s bigger
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

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I don’t remember which one became my patient first. I think it was Him. But it could have been Her. He was initially more memorable. He liked to show me pictures. Of his woodworking and antiques he’d restored. Of his boys. Of the squirrels they’d killed that year. I asked him not to show me the squirrels but he did anyway. She was quiet. Told me about the jewelry she made and the things she grew in her garden and foraged for in the forest. I do remember the day I realized they were a couple. That he was the he she talked about and she was the she he talked about. The “Ohhhhh” moment. The “oh wait, she’s *that* She and he’s *that* He!” It happens a lot in my rural practice. Six degrees of separation is not a thing in rural northwest Pennsylvania. It’s more like two.
*
They started coming to their appointments together eventually. They would tell me about their garden and their yard and the retaining wall they were battling to put up. And they would tell me about things addiction patients in rural northwest Pennsylvania tell you about. Meth and heroin and jail and stealing from the people you love and five year old kids calling 911 when their mom overdoses. They’d both been clean a long time, but everyone had relatives and friends still lost in it. They were no exception.
*
They gave me things. A piece of amethyst they’d hunted and extracted themselves. A small glass vase with a flower from her garden. She gave me gardening tips, foraging tips, taught me some herbalism.
*
They were always late. Always. That was a given. And that was okay. As long as they came. Sometimes they mixed up their days and we’d get a call a couple days later and fit them in the schedule for another day. I always held my breath until they called. Because you never know. You never really know if something didn’t happen and if they’re really all right.
*
And so it happened that they came in a week or so after their appointment in early February. I wasn’t at my office in northwest PA so they came to my office in Verona. Sam got to meet them for the first time. They got to see my other office, which is fairy tale themed. I knew she’d like it.
*
She wasn’t herself that day, though. She was sad. So damn sad. He had to talk for her for most of the appointment because she couldn’t stop crying. She’d been depressed. But it was more than that. She’d been having pain in her side a while now and it was getting worse. She’d gone to the ER and they’d drawn blood work which came back with an abnormality but when they tried to get an IV in so they could run some imaging tests, the nurse couldn’t get it. They kept poking her over and over and she ended up leaving the ER.
*
I asked her some questions to see if I thought she needed to go to the ER right now (it had been a couple days since leaving the ER and she hadn’t gone back yet). Based on her answers I told her I didn’t think it was an emergency but she needed to go back and get the test done. I said maybe she could try going to a different ER where the nurses were better. We talked about her depression and I started her on an antidepressant and told her to email me in a couple weeks to let me know if it seemed to be helping at all so we could work on the dosing.
*
I had a crystal sitting there. Malachite. A pretty dark green stone. I’d been feeling for a couple of days I was supposed to do something with it. An odd feeling kind of hard to describe. Like, restlessness. But with a stone. And before she left I took it and said, here, I want you to have this. And she told me she had something for me too. It was a necklace she’d made but she’d felt timid about giving it to me. But when I gave her the crystal, she said, she felt okay to give me the necklace.
*
He said, (or maybe she said?) that it was fitting because it had a star on it and pointed to my walls. The room we were in has a Sleeping Beauty theme and is covered in stars. (It is based off something I wrote about kids with PANDAS battling the disorder and emerging from it, like sleeping beauties waking up). I took it and told her I loved it. And I did. When I went to put it on, the chain broke, so I put it in my pocket. My back jeans pocket. And we walked out together and said our goodbyes. And Sam said they were sweet and I said I was worried about her. And I was.
*
Somewhere between there and my kitchen, I lost it. The necklace, that is. I realized it later that night and told myself, it’s here somewhere. It’s not gone. It hasn’t fallen off planet Earth. You’ll find it (this is the same thing I say to my children when they are panicking over something they’ve lost. I find it is helpful to give myself the same talks I give them pretty often). I looked a couple places I thought it must be (the cubby over my coat hook by the front door, the back pocket of those jeans I’d since thrown in the hamper) but it wasn’t. Over the next few days I looked a few other places and it wasn’t there either. I tried to remain calm.
*
Then a week later I found it. I was trying to dig a quarter out of my left coat pocket for a cashier, in line ahead of a grumpy resentful old man in the Giant Eagle “12 Items or Fewer” lane and I pulled it out instead. I was relieved. He didn’t care. At all.
*
I went to coffee with a friend that morning (please note: this is a rare occurrence) and stopped in at the crystal shop across the street (please note: this is not a rare occurrence). It had been quite a while since I’d received that amethyst. A lot had changed. And I now frequented the local crystal shop (thus, the malachite). I was browsing on this particular day and saw a necklace with a stone in it that looked like the one my patient had given me. I excitedly drew the necklace from my left pocket and held it up side by side to the other and they were an exact match. I told the women in the shop the story of the necklace and asked what the crystal was. They told me and I asked if I could take the little card that had the name of it and its meaning and they said yes. And they said how sweet it was my patient had made me a necklace. And I said, yes she’s very sweet.
*
The next day I was answering the phone (Sam was out of town and I was like a dad on a laundry detergent commercial, drowning in ineptness with a lost look on my face, trying to perform basic office functions). I was relieved when a familiar voice spoke back to me. It was him. And then it happened. One of those moments. One of those moments that create a Before and After in your life. He told me she had cancer. One of the really bad ones. There’s no such thing as a good cancer. But there are such things as really bad ones. That’s what she had. I stopped breathing for a few seconds. Parastalsis slowed. I got goosebumps (the medical term for that is piloerection. It’s the same thing that makes a porcupine’s quills stand up when it sees a predator. It’s supposed to make us look bigger and scarier, in theory. It does not, in practice). In my head I thought, “Fuuuuuuuuccccckkkkk.” I did not say this to him. I asked how she was. I asked him a series of questions trying to get more medical type details. I tried to get him to say something that would make me realize he’d gotten it wrong and it wasn’t actually cancer. It didn’t work. He said she was resting but I should call her later. I said I would. Even though I was scared to. Because there’s nothing really great you can say. Because you’re a doctor and you’re supposed to fix people and this is not something you can fix.
*
Her palliative care doctor called a little while later while I was on the other line with someone considering making a medical marijuana appointment for anxiety. They had a hundred questions and, in the end, said they’d call back once they decided what to do. I listened to his voicemail and frantically wrote down his number and called him right back. He was nice. God help me, he was a genuinely nice, caring doctor. If you knew doctors like I know doctors, the way they actually talk when there aren’t patients around, you’d know how rare a thing that is. He hadn’t seen her yet (the appointment was for the next day) but he wanted to touch base with me since I prescribe her a controlled substance and his role was pain management (also prescribed substances).
*
When I talked to her that night (well, to her voicemail), I let her know the pain doc was good people and would take good care of her. And he did. We have texted and talked since then, each step along the way, She and I. He and I. And even the palliative doc and I. There is more to it than this, various details you might not expect. But the heart of it is this: a really beautiful human being is sick with something she likely won’t survive. She is in a lot of pain. And the man who loves her is doing an amazing job supporting her through it. He is an unlikely romantic hero. Not a sappy, trite one. A genuine romantic hero. And she is a warrior. Strong and smart and intuitive and kind and creative and honest. And she is so damn young. Too damn young for this shit.
*
And so it was that I came to wear a star necklace everyday (I ordered a new chain for it the day he called with the news. I kept it in my pocket until the chain arrived). And so it was that I came to wear that necklace the night I ran into a good Christian I know.
*
The Good Christian looked at it in horror. Genuine fear in his eyes. And he said, “Have you lost Jesus?” He was distressed. I looked at him and said, “What?” And he pointed to my necklace and said it was a witch’s necklace, a Wiccan necklace. I said, it’s a star. A patient made it for me. That doesn’t mean I’ve lost Jesus. He looked… freaked the hell out.
*
And I thought of the word the palliative care doctor had used when he told me about her CT scan. Innumerable mets. Meaning, the cancer had spread to so many spots, the radiologist gave up counting. I remember when he told me that I wondered, at what point do they stop counting? 10, 20, 100? Maybe that particular radiologist was lazy and she really only has 3. But that’s not likely. When he used that word, innumerable, the hope I’d held out faded away. And I began to focus on how we could all support her in finding peace and being comfortable and doing the things with her last months she’d like to do. Because, lets be honest, doctors very rarely actually fix patients anyway. So maybe this very nice palliative care doctor and I could help her with these things. Hopefully I could be of use.
*
I thought of that word, innumerable. And I thought of the cancer growing inside her. And about how brave she is. And how sweet her he is. And I looked at this Good Christian and saw something in him. A different kind of cancer. One with innumerable mets to the soul. Dark and sticky. Inoperable. Incurable.
*
And I thought, this patient knows more about Jesus than you ever will. Because Jesus is love. And she is full of love. And she has brought joy and love to so many people. And she will keep doing that. Despite it all. She will keep inspiring other people to love. And she knows that I love her. And she lets me love her. And loves me back.
*
And that, dear reader, is not something the Good Christian is capable of. Not something he even understands. And that is why a necklace can inspire a look of dread and disgust in him. A star. An innocent little star.
*
I told my kids a bedtime story tonight. The boy in the story was looking up at the night sky when a shooting star appeared. My daughter got so excited and was urgently shouting “make a wish quick! Before it’s gone!” She was nervous the boy in the story would miss it. Because everyone knows if you make a wish on a shooting star, it comes true. Because that is what stars are for. To wish upon, to make our dreams come true as we sleep beneath their lovely glow. They’re magical. And shooting stars? They’re actually little burning meteors,  magical, glowing rocks. Kind of like amethyst or malachite.
*
If taking comfort in that means I’ve lost Jesus, dear reader, then consider me lost. Because not every sleeping beauty wakes back up at the end of the story. Sometimes her true love kisses her goodnight one last time. And releases her to shine down on us and remind us of who we are, innumerable stars in an endless universe connected to one another always.

 

***

Oh, life is bigger
It’s bigger
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 corner
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 laughing
I thought that I heard you sing
I think I thought I saw you try
Every whisper
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
Consider this
Consider this
The hint of the century
Consider this
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 laughing
I thought that I heard you sing
I think I thought I saw you try
But that was just a dream
That was just a dream
That’s me in the corner
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 laughing
I thought that I heard you sing
I think I thought I saw you try
But that was just a dream
Try, cry
Why try?
That was just a dream, just a dream, just a dream
Dream

Good Friends Are Hard to Find (or, My Brother from Another Mother) (or, Tacos Fall Apart Sometimes and We Still Love Them)

01 Sunday Mar 2020

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It’s the Kalenda of March today. You may have heard of the Ides of March (especially if you took Latin at Indiana Senior High like I did) but probably not the Kalends of March. It is the first day of the month. It comes from the same roots as the word calendar (thank you, Latin class. You rock) and was part of the newly formed Roman calendar which was no longer lunar like all those before it (see, for instance, the Hebrew calendar which leads to holidays falling on different days each year). The lunar year is made up of equal months that follow the waxing and waning moon. The Roman calendar had to make up the idea of a Leap Year to reconcile its imperfection.

And so here we are on the Kalends of March, the day after February 29th. That pesky day that tries to make up for the illogic of the Roman calendar. The moon and it’s cycles have always been linked to the Divine Feminine and Nature, so it is no surprise the Romans wanted it squashed. 

March is my birthday month. I will be 41 on the 24th, a few days after the spring solstice. My 40th year has been intense, to say the least.

Some good, some bad, most of it both. 

With me through all the ups and downs have been a few people I managed to stay close to despite the relative isolation I found myself in in recent years. One is a wonderful fellow PANDAS mom, one a good friend from college who was with me through the Jeremy ordeal, and one is my friend and coworker, Sam (he says I can tell you his name. I always get consent, dear reader).

Sam came to my practice at the suggestion of my husband. He recruited him. And for that I am eternally grateful. Sam is warm and sunny and kind and just fills you with positive energy from the second you meet him, whether by person or over the phone as many of our patients do. I cannot tell you how many patients pause in their appointments and say, I have to tell you Sam is wonderful. I say, oh I know! And they look at me very seriously and say, No, I mean it. Truly wonderful, (as though I’m not convinced) I was so nervous when I called here and he made me feel so comfortable and so much better. Never let that one go! I’ve even had patients try to hire him away from me (no joke). They send him chocolate covered strawberries and give him birthday gifts. When I told our grove city patients, who have only talked to Sam on the phone since he doesn’t come up to the grove city office with me, that he was coming up in March, it was like I’d told them a celebrity was coming. The excitement was palpable and real. 

Sam was with me through a lot this year and always there however I needed him to be. He never tried to tell me what to do as I tortured over some big decisions. He listened. He heard me and allowed me to talk it out to figure out the answers I already knew deep inside. He laughed with me. He sat with me as I cried. We drank champagne sometimes; other times we talked about how damn unfair some of our patients lives are and how we wish we could do more. 

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More than once he has run something badly needed to my house at 10 at night (not sure what my neighbors thought he was putting in my mailbox but I can assure you it was all perfectly legal). More than once he has either run my son Mies to school when he missed his van, run my office with me completely unavailable tied up in court, run inconvenient errands for me or ordered me rose water pistachio ice cream (vegan if course) when I really really needed it (and run it over to my house of course. The man runs). 

Sometimes we bitch about men together, even though Sam is a man. Sometimes he lets me bitch about women to him, even though I am myself in fact a woman. I know there’s nothing I can say to Sam that will make him judge me or love me any less. (Well maybe there’s something but it would have to be pretty extreme). 

Sam has reminded me I am a good person. That there are parts of myself I’ve pushed down so many years that deserved to rise back to the surface. That it’s okay to be a contradiction. That it’s okay to not be okay. Because everything is going to be okay. And it is. 

So it is not just female friendship I am reveling in now. The Divine Masculine and Divine Feminine are in us all. We must embrace both. Sam does that beautifully. He is a fabulous moon, orbiting with me. I no longer orbit any person. But I make my way through space , through the cycles, pulling the tide in and out, with some wonderful fellow celestial bodies. You can keep your Leap Day. We will take the solstice and the mother moon (and some champagne lunches from time to time).

Love that seeps into your marrow

27 Thursday Feb 2020

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I am sitting here at my old dining room table but my mind is somewhere else. This table that once held so much meaning, about the past and about the future, now feels so hollow and dead. This house is no longer my home. Was it ever? It was lonely. Lonely house, lonely bed, lonely heart. How different things are now.

My heart is full. My bed no longer feels lonely. My house is very much a warm and cozy home. Something this house never was. 

Couple at a table holding hands

Lesbian couple at a table holding hands

As I wrote about here, I have recently found a soul connection with a good female friend. It is a spiritual thing, love. When you are truly connected, feel known and understood, it is not something of the surface. Not hollow. It goes into your heart and soul and seeps deep into your bones to the marrow, into the osteocytes and osteoclasts and osteoblasts. Into the matrix of your skeleton, changing your vibration and energy and that of those around you. It is contagious. It resonates through my house and my children. 

And so my mind is somewhere else as I sit at this table I once sat at, but which was never mine. A table where many words were spoken but few actually heard. We have a very different table now. One where all of us are heard. And none of us are alone.

June 19, 2008 (or, Tequila!)

19 Tuesday Jun 2018

Posted by in kids, love, marriage, medicine, my awesome husband, PTSD, Rape, Uncategorized

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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.

Tequila!

13 years

03 Wednesday May 2017

Posted by in autism, doctors, kids, love, medicine, PTSD, Rape, special needs, Uncategorized

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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. 

the smell of collard greens and sickness: 38 today

24 Friday Mar 2017

Posted by in kids, marriage, my awesome husband, parenting, PTSD, Sin, Uncategorized

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Today was the kind of day you question this whole having-5-kids thing. It’s my birthday and I’ve spent it tending 3 sick kids and taking another one to the psychiatrist. We’re talking wall to wall puke and diarrhea. Kids whining and crying. Wailing and gnashing of teeth. And always, always, the cry from all directions: Mom!

That said, 38 is a good birthday. The sun is shining. My husband surprised me with some beautiful flowers (even more a surprise because I ran into him at the store as he was buying them-he thought it ruined the whole thing but I found it more of a unique thrill). Granted, the 16 month old knocked the flowers and the 2 quarts of water they were in on the floor, but still. Clean up efforts of the spill were difficult secondary to every single rag in the house being in the wash, dirty or currently used as a puke reservoir. But still.

I spent my 28th birthday in the midst of my five month long trauma. So, Hell. I spent my 28th birthday in Hell. The great thing about trauma is that it makes puke and diarrhea look pretty damn good.

I took my sick babies for a walk in the double stroller today around our neighborhood on the river. I ate Thai food and vegan cheese cake with a very nice raspberry sauce, made by my hubs. I drank some wine and even convinced my teetolaller hubs to join me. My kids all made me cards (ten minutes before the party once forced to by the hubs) that were very sweet. My hubs spent the day, when not reducing raspberry sauce or walking our daughter to the dollar store for more pink balloons, working on the medical practice we are opening. The best present ever.

And  I got one other very important gift: time to write this.  Luxury living at its finest. I do not know how I could have made it to 38 without writing. It was my escape as an outcast Aspergery tween, was my voice against oppression in high school and beyond, won me scholarships and fellowships that made me feel like maybe I really did belong in academia, inspired lyrics that gave me the drive and the confidence to sing in a punk band in front of hundreds of people despite being completely terrified, got me published in a legit medical journal at a time when I struggled with feeling like I was a *real* doctor. Most importantly, writing got me through the weeks and months directly after Jeremy was arrested. Through the second trauma of my medical school shaming me and trying to ruin my career. And it preserved my memories. A true privilege few trauma survivors have.

This blog helped me recover from my PTSD. It helps me still. The core of PTSD is shame. The only way to battle shame is to speak your truth. More specifically, to have someone hear your truth. And not walk away. It is a small little blog with a small group of followers, and I am grateful for each and every one of you. You are a precious gift to me on this my 38th birthday.

It surprises me how I begin to write these entries with a problem and think to myself “Why are you dwelling on this problem with no solution? Cut the pity party.” And I start to write and by the time I am done, I have found an unexpected solution or a new way of looking at it, or have found a path to accepting it as it is. It makes me wonder if anyone can recover from PTSD without creating something. Trauma is the opposite of creation. It is destruction. It is the Fall in the Garden, the closing of the gate. What is it that Eve suffered for the Fall? Pain in childbirth. Pain in creation. But she did not lose the ability to create new life.

There is a certain pain to my writing now that wasn’t there when I was younger. Before my trauma. Before I had my first little boy and was told he was sick at 6 days old (and on the 7th day God rested. I cried the deepest cry I ever have while God rested. He and I are still hashing that one out). Before. But there is still this gift of the ability to create, as God does. And there is a healing in it. And a connection. Maybe not to God so much, but to other people, other survivors–not just of trauma, but all the sad things we live– to time, tradition, cyclical history. And a connection of ideas, of the points of my life, of the people who’ve passed in and out of it. Maybe, just maybe, if I keep writing, it will all make sense. The connections will be drawn, the pattern will show itself. There will be an answer.

I made a big batch of smoky vegan collard greens today for lunch. I made a lovely kale strawberry smoothie for breakfast. I took my medication. I exercised. The day was still utter chaos. I was still pretty damn grumpy for most of it. But I still ate my greens. I did not resolve my ongoing spiritual struggle over the nature of God (he can’t be all loving and  all powerful, so he mustn’t be all powerful so… where the hell does that leave us?)  But I still ate my greens. I was a highly imperfect mother and wife. But I still ate my greens. I was lonely for a lot of reasons. But I still ate my greens.

And so, the house came to smell of sickness and collard greens on this my 38th birthday. But it was 74 and breezy and so we opened the windows and doors and aired the place out. Took the baby out in the yard barefoot. Walked down to the public dock and watched the water. Hung pink streamers and balloons and had a little party. Watched a cheezy terrorist movie starring Morgan Freeman with my husband with the volume down and made up our own dialogue (lip reading did reveal Mr. Freeman called one of the characters “son” as I predicted he would). Spilled some wine on the couch and laughed about it.

We aired the place out because, as I realized shortly before my 29th birthday, I am not in prison. I am alive and I am free. This is not a cell without windows. The sun is not kept from us. And I am not alone. I am eating my greens and cleaning up the messes as they come. The stuff of life. 38 years alive. Booyah.

The World is Coming to an End

27 Sunday Nov 2016

Posted by in kids, love, marriage, my awesome husband, parenting

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My husband is a filmmaker and he made our wedding video. I am blessed like that. He edited it, picked out the music and even hired an animator to make an animated version of the highlights of our relationship. Impressively, he did this while broke and during a really painful separation I had instigated. #MaritalSaint.

We watch it from time to time and we had been meaning to sit and watch it again for the past few months now. Our daughter Lena loves weddings and kept asking when we would watch it. We finally carved out some time to watch it last week. As Lena sat oohing and ahhing over my pretty dress and the “beauuuutyful flowas,” I found myself crying. Which was odd. You see, I am not a crier. I mainly cry when

  1. flooded with pregnancy hormones
  2. when extremely exhausted or
  3. when extremely depressed and heading into a panic attack. When it feels I am falling into the blackness and my world is coming to an end.

I cried several times during the video despite not wanting to do so in front of my sweet, very empathetic Lena. Unlike my boys, she notices any time I am sad or angry. Sometimes she notices before I do. #HighFunctioningAutism. And unlike the boys, I can never lie my way out of it.

I cried as we watched my father give me away and when my nieces walked down the aisle as little flower girls. My wedding was really the last time I saw my sisters and my nieces. I have since then physically seen them a few times, but it was a hollow, awkward exercise. It only served to remind me of what I’d lost.

I watched my two nieces in their pretty little dresses walking down the aisle. The older one was 6 1/2 and the younger one 4 1/2. Smiling and sweet. At the reception the younger one danced with abandon and ran around, often times chased by her father trying to get her to do something. She was quick and evaded capture often. As I watched them, I realized they will forever be caught in this age in my mind. They will never age. Forever sweet, spunky little girls.

I saw them for the first time since the wedding (the first time in 5 years, in 60 months, in 1,825 days) this past summer. 11 1/2 and 9 1/2. They were hard to recognize. They looked so much like their mother now. They looked so grown up. They did not talk to me or my boys.

My boys, especially the Axe, had been asking to see them for five years. He never gave up. He couldn’t understand why he wasn’t allowed. I didn’t understand either and couldn’t figure out how to explain it. I told him, my sister is mad at me and doesn’t want to see us. He asked why she was mad and I said, I don’t know. Because I don’t.

Now, they were strangers.

My sister gave her older daughter my name as her middle name. Because I had helped her through her very long, very difficult, downright heroic labor. It meant a lot to me. An overwhelming lot. I wonder now what she tells her when she asks where her name came from, as I often asked my mother when I was a little girl.

I cried because I will always miss them. Because they will forever be little girls in my mind even as they grow. And that is a very sad thing, to never grow up.

I cried too to see my parents. My father giving me away.

“Who gives this woman to be married?”

” I do.”

But they didn’t really give me away. They couldn’t bring themselves to let me go. They couldn’t stand the thought of letting me grow up. I was forever a little girl to them. *Their* little girl. They could let no one take me away. It did not occur to them I was choosing to go away, that no one was taking me. In their mind, I was theirs and now he was taking me to be his. After all, a little girl is not able to make such decisions.

If they’d let me go, I would have. I really did want to marry my husband and have a home of my own. Every time I’d left my home as an adult I always came back. I went away to college but then transferred to the local school and lived with them. Then I met my first husband and moved away with him and got married. But then I divorced him and again lived with them for four years during medical school. Then I met my forever husband and moved away again. If they’d let me go, I would have stayed with him. But they couldn’t and I didn’t. I left him twice. I left him in a sudden, jarring, couldn’t see it coming way. Twice. And each time returned to them. The first time I physically moved back in with them. The second time, only emotionally so.

And a man shall leave his parents and cleave to his wife. No mention of the wife in that one.

My husband would say to me I was too attached to my family and our marriage wasn’t going to work until I grew up and left the nest and learned to put my kids and marriage first. I kept insisting I had and offered up various bits of evidence to support the patently untrue assertion. He was never convinced.

They had made clear while we were dating they didn’t like him. My sisters broke off with me after the wedding. My parents remained and put up a show of liking him. When I left the first time, it was ay my family’s urging and we sat discussing their true feelings about him. When he and I attempted to reconcile shortly after the separation I kept it a secret as I knew they’d be upset. I was right. When they found out from reading text messages on my phone, my mother kicked me out. Me and my three kids. Me with nowhere to go. I remember calling my oldest sister crying uncontrollably, panicking, terrified. Terrified because I had nowhere to go but mostly because when this side of my mother came out, I felt that black hole feeling. That I was being sucked into the abyss. The world was ending.

Our mothers are the source of life. They are supposed to be the safe womb we can always return to in times of distress. Mine was not. It was in times of distress she was most likely to turn from a seemingly sweet cookie baking, nurturing mom to an ugliness words cannot describe. A cold hate would flow from her and destroy me. My world spinning around me, closing in on me, suffocating me into non-existence.  I would go from being a sacrificial devoted mother in her eyes to a crazy, unfit mother who put men before her children. She would threaten to give my ex-husband money to get a lawyer and take my kids away. Crazy. Unfit mother. Woman who puts men before her children. These were the things I feared most. These were the demons that haunted me. Was she right? Is that who I truly was? That doubt, that possibility, was an endless source of shame deep within me.

You never really knew when she would turn. I grew up in a minefield. Trying so hard not to set her off. And always failing.

I remember going back to my bedroom, the room I had slept in all my life, that I had returned to once again, and calling my husband. Speaking in hushed tones and sobs about my mother kicking me out. He couldn’t understand what I was saying. I was terrified for my mother to hear me so I spoke quietly and ended the call quickly. He had no idea what had happened.

My mother soon summoned me to the living room with an offer. She would not kick me and my babies out on condition that:

  1. I send my two boys to live with their father as she did not have the energy for them. My daughter could remain and she would watch her while I completed residency and
  2. I was to cut off contact with my husband. Any time we met for visitation with our daughter, I was to be chaperoned by my father. They didn’t want my manipulative evil husband sucking me back in. After all, I was just a little girl and easily tricked.

I agreed, so scared. I cut off all contact with my husband without even explaining why. They soon rescinded the demand I send my boys to live with their father, but not the second. We met for visitation with my father awkwardly standing with us. My husband brought me gifts, sweet gifts. A CD he’d made me. Sweet, thoughtful gifts and cards. My family rolled their eyes and laughed. How could he think gifts would make up for what a horrible person he was?

In time, I began communicating with my husband again and we decided again to reconcile. This time, I knew I couldn’t let them find out as we prepared, finding a house to live in and meeting as often as we could (he was living 3 1/2 hours away). My parents rarely left the house, but in August there was a family reunion they would be at for a few hours. In those few short hours we packed up my belongings, disassembled my boy’s bunkbeds and moved all of it out to the new house, an hour away, where I was completing residency. I left them a note saying goodbye.

Their little girl had once again been stolen.

In time, I unpacked the dysfunction of my family in therapy. I began slowly to set boundaries and view my family and my childhood for what it was. I realized there was no emotional intimacy. I realized I had been raised to trust no one but the family. I realized how afraid I had been all these years of my mother disowning me, as she had other people in her life. I realized my mother and I were enmeshed and yet not close at all. Not in the ways that matter.

I left my husband again this past summer just as suddenly, just as secretly, just as heartbreakingly. We reconciled again. And my parents said they were fine with it, but began to punish me in subtle unspoken ways. But still I kept them in my life.

The breaking point came a few months later with the dog incident I have explained in previous posts. I found after I broke with them, my marriage was suddenly so much better. My opinion of my husband so much better, my love for him unconditional. I was not expecting this. I came to see all the subtle ways they had undermined our marriage while, on the surface, appearing to be supporting it. How incredibly cruel. To me and to my kids. Crazy. An unfit mother. Projection.

I no longer have my family in my life and so I cried as I watched my father giving me away in my pretty white dress. They say in Catholicism that we are not waiting for the world to end when Christ comes. The world ends many times in our lives. When we get divorced, get a bad diagnosis, lose a loved on. It ended for me when I found out my son was sick at 6 days old, when a guy I’d been in love with broke my heart, when my medical school tried to ruin my career for turning in a child molester. The world ends but a new one begins. It prepares us for death, they say. For it is in dying that we are born again.

My world has come to an end once again as it has before. But this time I can see clearly the new world that has been created in its place. My children growing up healthier and happier than I, my marriage finally solid, my body and mind stronger than they’ve ever been, my connection to God growing.

They couldn’t give me away and so now I have left of my own will. I am not a little girl. I have grown up.

All it took was about 100 water balloons

25 Sunday May 2014

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We survived our first Electronics Free Sabbath today. Poobah and I were discussing the boys’ increasing dependence on iPads, iPhones, and computers when he suggested that we ban electronics on Sundays until 7pm. I liked the idea instantly, but we figured it wouldn’t go over well with the boys. To put it lightly. I suggested we plan out fun family activities so we could pitch it to them as some fun we were adding in, rather than something they loved we were taking away. Poobah liked the way I was thinking, and began setting things up.

We began our day with a big Sunday breakfast, a tradition in my family. Growing up, my ex-Christian parents still held Sunday as a special day. We didn’t go to church, but we rested (the only day of the week my farmer father didn’t work) and had a big special breakfast and a big dinner, generally at four in the afternoon, farm-style. So, I got up and cooked us all eggs (egg whites for Poobah, guardian of his uber-low LDL), hash browns, and soysauge (don’t tell the kids, they think it’s dead macerated pig. Soy is really so disgusting compared to real sausage after all). We finished our orange juice and off to church we went.

Sounds so simple, but here’s what really happened: Poobah scrambled to clean up the kitchen while I scrambled to get dressed with Princess crying her head off the entire time saying “Door” over and over again in an attempt to convince me to let her outside. Soldier Boy attempted to get dressed on his own but turned into a weeping puddle when he kept putting both legs into the same leg of the pants. Tree lamented church being a “waste of time” (as opposed to playing on his iPhone) and sat moping on the couch until we’d told him to get in the car for approximately the 56th time. The Ax, oddly enough, put his shoes on and went and sat in the van without even being told to do so. Little miracles all around.

We eventually managed to get on the road but only after realizing Soldier Boy was missing when our head count came up one short. I found him wandering the basement whereupon he explained to me he’d attempted to go out to the car when Poobah told him to, but he hadn’t been able to get the front door open (he has issues with doorknobs). I asked him why he didn’t just ask for help, but he didn’t know why. Out the door we went.

We arrived at church only ten minutes late which is pretty darn good for us. The parking lot was crowded, presumably for Memorial Day. Poobah commented that this must be a western Pennsylvania thing. We grabbed Princess (her shoes had been forgotten in the flurry of morning activity so we carried her across the gravel parking lot) and herded the boys toward the door. Poobah did a body check for contraband on the boys (minus the pat down) which didn’t turn up any hidden iPhones or the old iPad in the seat of their pants tricks. We left the three boys with Princess in the nursery and went in and found two seats towards the aisle, in case we needed to get out to the nursery in the middle of service (which we do about 100% or so of the time).

We arrived as the singing was slowing down and the Memorial Day honoring of the veterans was commencing. We sang “God Bless America” as the ushers circulated the collection plates. I didn’t sing along as I don’t feel comfortable doing anything very patriotic when I’m in the company of those who don’t recognize the imperial atrocities the US government has visited on various developing countries throughout history, in addition to the good the ideals and the people of the nation have done along the way. The preacher then began to preach on a passage about Saul from book of Acts and we sat listening, Poobah more engaged than I. Soldier Boy came in, a few minutes before the kids were to be dismissed for children’s church. Tree came in, preferring the teenage boredom of the service to the teenage boredom of watching the baby in the nursery. Soldier Boy was soon dismissed and Poobah and I focused on the word the preacher was giving.

My mind drifted elsewhere as he spoke with fire and a dash of brimstone, to what we’d have for lunch and what I might wear when I gave my talk on autism to a group of physicians later this summer. I got the general gist of the sermon, but probably not to the extent I was supposed to. I did clap when the preacher talked about how much he loved when sinners came to church. Jesus surrounding himself with sinners and prostitutes had always been one of my favorite things about the gospels.

Church ended and I tended the brood as Poobah went up for prayer. I watched Princess as she walked up and down the steps in the lobby (“steppies” being her greatest passion in life right now) as the boys beat one another up in the nursery. A concerned older gentleman said to me that I’d better go check on them as one boy was kicking the other one. I looked in the room and saw The Ax on the floor, giggling, with the much bigger Soldier Boy poking him with his foot. I told the gentleman they were just pretending but he insisted they were not. To placate him, I went and in and told the boys to go outside and play. Princess remained at her station on the steppies, mastering the craft of going down them holding onto the rail, instead of mommy’s hand.

Poobah came out and we made our way to the minivan. I let Princess walk up the cement steps between the two levels of the parking lot despite being barefoot and got a disapproving comment about doing so. Tough crowd. We came home and I packed up peanut butter and honey sandwiches as Poobah loaded up the bikes for our afternoon adventure. After a diaper change, the boys getting out of their church clothes and into their play clothes, sunblock application, homemade lemonade made and distributed amongst five bottles, the cooler filled with berries and watermelon, and everyone peeing in the potty (or at least trying after being told they had to after whining that they didn’t have to go), we were on our way.

I rode in the back with The Ax and Tree (long story) while Soldier Boy entertained Poobah with tales that only half made sense to him, appropriate, as I imagined he was only half listening anyway, focused on finding us the out-of-the-way park we’d never been to before. Princess snoozed, luckily, preventing her from being Miss Crankerpants for the rest of the afternoon. It turned out Poobah’s map wasn’t of the best quality, so we made some loops and hit some dead ends before arriving there, guided more by his inner compass than the map. We were all excited to get out of the van and get some lunch. We ate and played on the playground. Soldier Boy was already on the swings by the time I made my way up the little hill to the playground, chatting up a seven year old little girl next to him. Soldier Boy and The Ax were both incredibly social, completely at ease wherever they want. They’d apparently gotten it from their dad as I was a shy kid and am a shy adult now.

We ate. Princess found some steppies to work on and some pretty big slides to go down (she knows no fear). The boys played on the big spinny thing playgrounds tend to have. Soldier Boy found a fort for himself and a stick for a gun. That’s about all he needs in life.

We played a while and then Poobah readied the bikes for us. Cooler away, helmets on, let’s ride. The Ax was struggling with his bike a bit. He only just really began riding well this summer and he was having a somewhat off day. Soldier Boy was happy as usual on his bike. He’s unable to balance a bike, related to his autism and issues, and is legally blind so we have a tandem type bike attachment with two wheels that attaches to the back of Poobah’s bike. Soldier Boy weighs a hundred pounds and can’t really pedal much, so it’s lucky for me I married the fit man I did. Princes was excited, sitting in her little seat attached to my bike. Tree was riding all around the parking lot, waiting for the caravan to leave.

We made our way to the trail, but it didn’t start well. The Ax was struggling with his bike and getting very upset with each fall. The trail started out uphill and little Ax just wasn’t ready for that so early in his bike riding career. We made our way long with me and Princess holding back to stay with The Ax It soon became apparent this wasn’t working, though. We canceled the bike trip and headed back to the playground. We played a while longer and drank our lemonade. We headed home around five. The ride home went smoothly.

When we got home, it was 5:30 and the kids were jonesing for some electronic time. Some serious moping began to set in. Poobah and I were in the kitchen discussing plans for the next day and I mentioned the water balloons we’d bought last week. I told him perhaps we could play with those tomorrow as well. Poobah, however, had a better idea. We could defeat the e-withdrawal the kids were going through with a good old fashioned water balloon war. I’ll admit I groaned a bit, knowing I was the designated water balloon filler-upper and tie-er-offer. But I put on my brave solider face and began to prepare to go to war.

Poobah brought a bin and put it on the dryer. I stood at the sink between our washer and dryer and commenced prepping the artillery. Soldier Boy and The Ax were on board and a bit giddy with anticipation, bit Tree was still sitting sullenly upstairs. As I filled, little Ax went upstairs and convinced Tree to join us. We were all excited. It was Poobah and Soldier Boy versus Tree and The Ax. Princess would no doubt wind up as collateral damage. They quickly used up the stockpile I’d supplied and starting coming in to ask for more. They were throwing them as fast as I could make them, faster actually. They all got in some good hits, their favorites hit being, of course, the ones that landed on Poobah. He was a good (soaked) sport and gave it back without mercy. Eventually my fingers grew weary from tying off so many little balloons and I called the battle over ( I looked on the balloon package and realized we’d gone through a good chunk of a bag containing 200 balloons). But not before getting in one shot myself: I launched a balloon from within the basement right at Poobah’s head as he bent over to help the baby. Line drive, direct hit, I sunk his battleship. He commended me on a good shot as he shook the water from his hair.

By this time, it was 6:45 and the kids were ready for the electronic fast to be over. They managed to maintain their cool and Poobah showed them some mercy, letting them break the fast five minutes early. I’d just finished making dinner at that point, but I gave them a five minute stay to get a quick fix. We ate a nice family dinner with Tree’ leftover birthday cake for dessert, and then the boys played their respective devices and Poobah watched the baby as I rinsed the dishes and swept the floor (Poobah washes the dishes but every now and then I do remember to rinse them so they aren’t crusted over when he washes them later on. Want to paint an accurate picture here, credit goes where credit’s due and all that).

All in all, it had been a great day. No meltdowns, no sunburns or broken bones, no one going into convulsions from lack of screen time. Good family time spent doing something together instead of sitting in the same room, staring at screens next to one another. We’d managed to pull them out of their games and into this thing called life. Let’s hope we keep doing it, a little more each day.