They say you were something in those formative years/hold on to nothing as fast as you can

How are you supposed to feel when someone dies who was very important to you for a very short time very long ago? It seems like I shouldn’t be allowed to be as sad as I am. Like I’m grabbing the coat tails of someone else’s tragedy. But all I know is that there are a small smattering of people who played a role in my life during pivotal periods who I’ve never been able to reconnect with through social media as an adult, and I can now stop my periodic Google searches for this one guy. I never found him. And there’s a tiny hole in my heart because of it.

The end of my eighth grade year was a time of shifting loyalties. In my overly dramatic brain, I was beset on all sides by friends who had never been friends, by enemies who had always been enemies, by people who did actually like me but sensed which way the wind was blowing and desperately jumped ship when being my ally became a liability. I had always been something of a joke, but as middle school marched towards its close, my value as a target for ridicule seemed to reach a terrifying crescendo.

But then something strange happened. An odd assortment of people began to tentatively stand by my side. People who had written me off as a hopeless nerd got to spend some time with me and realized I was actually funny and interesting. People who had always blended into the woodwork emerged and reached out to me.

I have no recollection of how my running joke with this guy started. We were in art class together; that was it. To be quite honest, there may have been some casual inhalation of rubber cement that made us think the whole thing was funny in the first place. But suddenly every time we passed in the halls, he would hip check me and we would trade our silly lines, act out our tiny play. There was no romantic aspect to it (that was already developing elsewhere with someone else I had barely noticed before). This was just a simple affectionate gesture between two people who were practically strangers until that spring, that spring that had been so bleak for me until that point. Did we recognize our mutual dysfunction? A similar darkness inside, a sensation of being lost and directionless?

1994 was a long time ago, and due to a variety of factors my once formidable memory has begun to crumble, so all I have left of him are snippets, small vivid moving pictures of the two of us from that summer and fall. I remember us at a birthday party, both having escaped from the main celebration, hanging off a bed and watching The State upside down. (It was the episode with the Sleep With the State Concept and Barry Lutz Monkey Torture, for the record.) I remember both of us leaving tryouts for soccer teams that we had very little interest in actually joining, strolling with another friend across a baseball diamond, a parking lot, a grassy quad. I don’t remember what we talked about, just a feeling of contentment.

I remember the new school year starting and alliances shifting yet again, making a new set of friends through the fall play, never really seeing him beyond the occasional nudge in the lunch room. And then I remember him being gone. And I remember myself losing my mind, and being too distracted by my own crumbling sanity to have any consideration for his disappearance. I knew he had disciplinary issues. I knew he had dismal grades. I assumed our school had “asked him to leave” because unless someone was actually caught doing drugs in the gym the administration was reluctant to do anything so déclassé as expelling anybody. I heard he had transferred to another local prep school. I decided he was fine. We were never the kind of friends who would chat on the phone, so we disappeared from each other’s lives.

One day he appeared at school, alongside another former middle school classmate (who had, presciently, left after 8th grade rather than bother with another four years of snobby nonsense). He shambled up to me with a huge smile on his face, I yelped with surprised delight and gave him an enormous hug. We fell immediately into our little script from years ago, a script that we had tossed out in favor of actual tentative friendship before he had vanished but still, always, the core of our bond. It was a stupid little bond. I was nothing more than a blip in his life, I’m sure of it. I called him Vinny. He called me Gina. And then he was gone. I never saw him again.

I saw his brother once, when I was living in New York City. I asked how he was doing. The answer was generally noncommittal but clearly not good. I could commiserate. That same night I caught a cab home from Grand Central, rode with the window down, watching the city fly by, letting the air hit my face, feeling that old emptiness, that old darkness. I woke up the next day and found I had plunged into my worst depression in years. It took me another two years to pull myself out. From the sound of it, whatever my old friend was going through, he was in too deep.

I searched for him every time a new social network popped up. Friendster. MySpace. I was actually briefly Facebook friends with some other rando from Buffalo who happened to have the same name until I read his profile and discovered this kid was about seven years younger than us and a drummer in a Christian rock band. Definitely not the same guy. I was apparently not the only one who had left town but occasionally poked around the internet trying to track him down; he had left absolutely no digital footprints. But he had never gone anywhere. As I now understand it, he was in Buffalo the whole time. And tomorrow, I am going to his funeral.

When you’re an adolescent, you break your identity down into pieces and then put yourself back together at least once, if not multiple times. Sometimes in that interval when you’ve fallen apart, you have a moment where you are briefly no one in particular, where you can look around with some peace and clarity and relate to other people with no baggage. The end of 8th grade was that moment for me. I was tired of everyone’s bullshit, sick of their expectations, over their preconceived notions of who I was and who I was supposed to be. And in that moment, I made a friend. Just for a moment. Not enough of a moment to merit the feeling I had in the pit of my stomach when I was told he had died, logically, but no one has ever accused the emotional portions of my brain of having much connection to logic. In that moment when I needed him, he was Vinny and I was Gina. Some days that was what made the difference.

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We shall board our imagined ship and wildly sail/Among sacred islands of the mad till death/Shatters the fabulous stars and makes us real

When my family went to visit Rochester this past spring, we drove past a huge old brick building that had obviously been vacant for quite some time.  “What is THAT?” my husband wondered.  “That’s an old insane asylum,” I told him flatly.  I was quite confident, and I was right.  I know what those things look like.  There was one on the street where I grew up.

Image

When I was an adolescent struggling with mental illness, I found the abandoned towers of the Buffalo State Asylum for the Insane both haunting and troubling.  I was never in any real danger of being institutionalized myself — for one thing, “institutionalization” the way it was practiced until the latter half of the 20th century simply does not exist anymore.  There was a brief passing threat that I might need to be hospitalized in the short term at a small inpatient facility, one with more modern methods, but also one where, as the ER doc informed me solemnly, “they do electroshock therapy.”  That put the fear in me pretty quickly.  I have a bad habit of wallowing in media that I know will upset me, so at that point I had read One Flew Over the Cuckoo’s Nest, The Bell Jar, Girl Interrupted…even thought I knew intellectually that a stay at the small clinic wouldn’t leave me lobotomized like Randle McMurphy, I also knew I didn’t want to take that chance.

The towers have been long since abandoned, but there is still a psychiatric hospital on the grounds near the old asylum.  The summer after my first year in college, I worked at a gas station across the street, and our clientele was largely composed of inpatients with day passes.  They were a colorful crew, all of whom had earned mildly humerous nicknames from the Stop-N-Go veterans.  They came in all day long, buying cigarettes, coffee, hot dogs, beer.  They had day passes, but nowhere to actually go during the day.  So they wandered up and down the street, hung out in our parking lot, mumbled to themselves, and drank.  There was one gentleman who my co-workers had dubbed “Rod”, because his feathered blond hair lent him a vague resemblance to Rod Stewart…if Rod Stewart was made entirely out of sandblasted leather and wore a torn-up denim tuxedo rather than flashy blazers and leggings. Rod would come in about four or five times throughout the say and buy 40 ounces of King Cobra malt liquor in a paper bag.  One day Rod came in to buy probably his third 40 of the day, and as I rang him up, he leaned forward and whispered conspiratorially, “You know, they’re all crazy over there.”

Mildly taken aback, I just smiled at him politely.  “Yeah?”

He nodded, and then added, “After a while it starts to rub off on you.”  He looked rueful for a moment, then turned and walked out the door as the Backstreet Boys crooned over the sound system.

“But I don’t want to go among mad people,” Alice remarked.
“Oh, you can’t help that,” said the Cat.  “We’re all mad here.  I’m mad.  You’re mad.”
“How do you know I’m mad?” said Alice.
“You must be,” said the Cat, “otherwise you wouldn’t have come here.
-Lewis Carroll

 

When my father was a child, he also lived near the asylum.  He and his cousin would ride their bikes past it after school, and the patients would be at their windows, shouting lurid things at them through the bars.  Hearing that story as a kid left me aghast.  It sounded so Dickensian somehow.  Mental patients hissing vulgarities at children from their cells.  Every time I drove by, I would hear the hissing in my head.  It felt uncomfortably real.

As an adult, my dad had a friend who worked at the asylum.  In a recent email, he described it thus:

“While I was waiting for my…friend to be available so we could go to lunch, I overheard my first schizophrenic conversation between an aid and a patient.  The striking this was that he kept repeating the same tape or gambit over and over.  And the aid had no other option but to put up with it and play her part over and over.

When I read this, I felt a chill.  Because it was immediately apparent to me that the patient in question wasn’t just schizophrenic.  He was autistic.  Because people with autism were often diagnosed with “childhood schizophrenia” (a diagnosis, by the way, that is almost unheard of to this day, to the extent that one girl with the diagnosis, Jani Schofield, has been making the talk show rounds like a carnival side show for half a decade now) and put in asylums.  That’s what we used to do with disabled children.  We locked them away.  Kids with autism, kids with Down Syndrome.  Doctors told their parents these children were hopeless cases. Temple Grandin’s parents were told to insitutionalize her.  Daryl Hannah’s parents were told to institutionalize her.  They were not to be seen.  They were not to be spoken of.

The great wave of deinstitutionalization in this country began with the one-two punch of the publication of Cuckoo’s Nest in 1962 and the Community Mental Health act passed in 1963 by President Kennedy.  Kennedy understood the state of mental health care better than most — his younger sister, Rosemary, was lobotomized and institutionalized for relatively shady reasons.  She had a low IQ and grew volatile and disobedient as a young woman.  By the age of 23, her father unilaterally decided that she needed radical treatment. The doctor who performed the procedure would “ask her to recite the Lord’s Prayer or sing God Bless America.

“We went through the top of her head.  I think she was awake.  She had a mild tranquilizer.  We made an estimate on how far to cut based on how she responded.  When she began to become incoherent. we stopped.”

Men reaching out past the bars. Autistics scripting endlessly to bored orderlies.  After a while, it starts to rub off on you.

“The thing that I have understood is that madness entails no obligations.  There’s no need to kill people in order to prove to them that you are insane.  They know it already.”
-Carl Solomon

 

“Carl Solomon!  I’m with you in Rockland
where you must feel very strange…
I’m with you in Rockland
where the faculties of the skull no longer admit
the worms of the senses
I’m with you in Rockland
where you scream in a straightjacket that you’re
losing the game of the actual ping pong of the abyss 
I’m with you in Rockland
Where you bang on the catatonic piano the soul
is innocent and immortal it should never die
ungodly in an armed madhouse.
I’m with you in Rockland
where fifty more shocks will never return your
soul to its body again from its pilgrimage to a
cross in the void.”
-Allan Ginsburg

 

We don’t really have institutions anymore.  The schizophrenics and manic depressives are in and out of prison instead.  People struggle through the waking world disguised in a cloak provided courtesy of Pfizer and Blue Cross Blue Shield, where we can quietly refill prescriptions and hide in plain sight.  Autistic children are integrated in mainstream classrooms, triggering horrified queries about the rising rates.  1 in 88.  Where did they all come from?  Where were they before?

They were in the institutions.  The ones that are slowly but surely being turned into luxury hotellike the one in Buffalo, on the street where I grew up. I am glad for continuing urban revitalization in my hometown, but I would rather spend a winter at the Overlook with Jack Torrance that spend a single night at the Richardson Olmsted Complex with the voice of a thousand McMurphys hissing in my brain.  Because after a while, it starts to rub off on you.

Feed Your Head

As some of you who know me well have probably ascertained, I am and will continue to be in the thrall of everyone’s favorite boogeyman lobbying group, big PHARMA. Yup, they make more money by perpetuating the absolutely miserable state of American health. But you know what? I take pills, and they keep me from killing myself. My father takes pills, luuuuudicrously expensive pills, and they DISSOLVE METASTATIC TUMORS. And my daughter, my beautiful little daughter, takes a pill. A pill that when the doctor first suggested it, my body tensed up in reflexive disbelief, and I barked out, without even thinking for one second, “There is no way my husband and I are medicating this child.” And then we did. And our lives, her life, changed in a way that’s been so dramatic over the last year, it’s hard to remember what she was like before. Because before, she could recite entire books and entire movies, but she couldn’t have anything resembling a conversation. Before, she had close to zero functional play — you would hand her two toys and she would simply bang them together in an effort to discover how much noise they could possibly make. Before, I had no hope that she would ever learn to write because she perseverated so intensely on writing implements that it was impossible to teach her how to use them: “I will just hold the pen. I can have that pen. I just need the pen. I can just hold that pen. Wanna hold the pen. Me to hold the pen. I need to just have the pen,” clutched in a death grip in her fists, one in each hand, a vitally necessary symmetry.

Before, she spent three years locked inside a brain that never ever ever stopped spinning, whizzing, whirring, screaming for a single second. The doctor who prescribed the medication looked at me, and then looked at D, who was, entirely literally, bouncing off the walls. Bouncing. Off. The walls. And she said, “Obviously this is making you miserable. But imagine how miserable it must be for her.”

There’s a great book called, “We’ve Got Issues,” by Judith Warner, who used to write the parenting blog on the New York Times website. She got a book deal with a proposal about how America is overmedicating its children. This was not a particularly startling thesis. It’s practically a media meme at this point. OBVIOUSLY we’re giving kids too many psychiatric drugs. DUH. No one even questions it. Warner must have thought the book would write itself. And then she went off to do her research and started meeting parents, these horrible parents who just want to drug their kids to shut them up…and she was shocked by what she found. Because none of the parents she met, NONE of them, want to be medicating their kids. These aren’t people who went diagnosis shopping, or are too lazy to bother parenting their spoiled brats. These are parents who are beside themselves with grief, children who are in pain, families who are doing whatever they can to cope with the unexpected hand they’re been dealt while simultaneously being ashamed of themselves for doing what all of society accepts, as a given, is the worst thing you can do as a parent. Drug your kid?! Who on earth would do such a thing?!

Hi. *wave*

Two days before my daughter’s third (3) birthday, I stuffed a tiny tablet of Ritalin into a juice box straw and watched her suck it down. And it was easily the hardest decision I’ve had to make as a parent, and just as easily the one I regret the least. Because the D that exists today is not the D that would have existed without that medication, and I firmly, fiercely believe that. You can throw all the behavioral therapy in the world at a child, but what good could it possibly do if she can’t hear you over the constant din inside her skull?

The first antidepressant I ever took was the wrong one. In retrospect I can now see that it triggered me into hypomania, and no one pinpointed that at the time because the psychiatrist I was seeing didn’t believe that teenagers could be bipolar. So, that put a bit of a hiccup into the first few years of my treatment. But the second drug I tried worked. It didn’t work immediately. But I remember very clearly, I was lying in a bathtub, a few weeks after I’d started the med, and I suddenly noticed that the fog that had utterly encased me for as long as I could remember had finally lifted. And I jumped out of the tub and ran down the hall to tell my mom that for the first time in a very very very long time, I wasn’t sad. I know the difference it makes when a medication can lift the fog, or stop the din.

So now I’m looking for a miracle pill that makes me not hurt. But given that the story of my psychopharmacological misadventures doesn’t end with me dripping wet and jubilant in my childhood kitchen, I know it’s never that easy. And it won’t be for D, either. We’re both in for long bumpy roads of throwing meds at the wall until we see what sticks. It’s not a road I would have chosen for my child, obviously. But it’s one that I knew was a possibility, to one extent or another, when I chose to become pregnant. And I have always felt that at least I am prepared as a parent could possibly be to help shepherd their child through this particular type of minefield. I just hope that…I don’t know what I hope. I hope she ends up happy. I hope I end up not hurting. Simple goals, but somehow also lofty ones. My hand hurts too much now to write anymore, so clearly we have a ways to go.

One time on House it actually was lupus, though.

Aside

Yes, I did finally see a rheumatologist, although my route there was almost comically circuitous.  You see, when I was at the beginning of my pregnancy with D, I developed a rash. Nothing excruciatingly itchy or horribly disfiguring, but these spots started appearing around my ankles and then slowly, randomly, scattered themselves up my legs and onto my torso.  The first ones I thought were spider bites, but then they got bigger rather than fading. They were red, kinda scaly, kinda itchy. So I showed them to my OB. “I have NO IDEA what those could be.” (In his defense, he was a third year resident at the time.) He sent me to a dermatologist (also a resident). “I have NO IDEA what those could be!…Can I take some pictures?” Nothing better than having the red splotches all over your swollen belly photographed repeatedly while you stand in your underpants waiting for a surprisingly painful punch biopsy. The results came back and the dermatologist, in her somewhat strained English, described it as “lichenoid…like lichen planus.  It’s maybe autoimmune.” “So, like, my skin is allergic to my fetus??” I ventured, although even as I asked I knew the answer would be inconclusive and unhelpful.  She ordered something called an ANA titer.  ANA stands for Antinuclear Antibody, and it’s basically a really broad test that indicates whether your immune system has possibly gone haywire and is trying to attack itself.  My result was borderline high (1:160) and I was told to go have a baby and then come back to check in afterwards.

I dragged a livid, wailing two-month-old into the dermatology clinic half a year later to show the doctor the even larger annular lesions that had formed on my thighs and chest late in my pregnancy but were starting to fade.  She prescribed a steroid cream to help them skedaddle faster and had me retake the ANA test, along with a larger set of tests that check for the presence of more specific antibodies that can help pinpoint particular autoimmune diseases you may be at risk for.  A few days later, I heard from a nurse in the office, telling me that my ANA was high again, so I might want to maybe think about seeing a rheumatologist. I said I was kinda busy with the whole “my daughter is screaming bloody murder in her car seat” thing, so I’d probably wait to see if anything weird panned out.  The nurse said that sounded fine.

And then I went off and started attempting to parent and realized with horror that it really doesn’t become any easier to make time for “self-care” as your kid gets older.  It actually gets way harder.  And then I had a second kid.  Ha ha ha ha, yeah, I know, I’m really not all that bright. And then my older kid got diagnosed with Aspergers! And ADHD! And then my fucking muscles started popping off like rusted bedsprings one at a time and I was all, hmmmmm…maybe I should get that referral after all.

A small patch of psoriasis on my knee finally gave me an excuse to head back to the dermatologist — a different woman this time, who seemed decidedly more concerned. She gave me another ANA test.  While I waited for those results, I flipped through my medical records (which I happened to have in full due to the legal process following a car accident) and found some interesting information that had not previously been adequately disclosed to me.

First of all, the pathology report on that biopsy was eye-opening, to say the least.  The rash that my doctor had said was “sort of like lichen planus” was actually described as “lichenoid dermatitis” and the pathologist specifically said he thought it was “unlikely” to be related to lichen planus but rather possibly associated with “collagen vascular disease”.  Thank god for the good folks at Habush Habush & Rottier, LLC, because none of that shit showed up on the little biopsy summary on the UW Health My Chart app. Also, some numbers caught my eye. The ANA test they took after D was born was actually higher than the first one (1:360) , and it wasn’t the only positive result.  I was also positive for something called Anti-SSA, an auto-antibody closely associated with Sjogren’s Syndrome and lupus.  I honestly don’t think the doctor ever even saw the Anti-SSA positive. Nothing in her notes says anything about it, and the last call I got from the office was the morning before that result came back.

This time around, a nurse called from the dermatologist’s office the next day.  My ANA was positive, and they would be referring me to the rheumatology department. “The good news,” she said in a misguided attempt to be perky, “is that all your kidney function tests are normal!” Was I supposed to be worried about my kidney function? Shellshocked, I hung up without asking for the actual result and had to call back to find out. 1:640. They took it twice to be sure. When they do an ANA titer, they dose the cells with fluorescent dye and look at it under a microscope to see the patterns the antibodies form on the slide. These patterns can also help indicate what autoimmune disorder you’re dealing with.  The first time they ran it, it had a “speckled” pattern, which is relatively non-specific but rules out much stuff other than Sjogren’s and lupus. The second test, the pattern was listed as “homogeneous”, which is pretty much only seen in  people who are either completely healthy…or have lupus.

So now one side of my brain has turned into George Costanza, wringing his hands and whimpering, “Is it lupus? It’s lupus, isn’t it?” And the other side of my brain is Greg House and is shouting, “It is NOT lupus.  It is NEVER lupus.” And, you know, in general I’m inclined to agree with anything Hugh Laurie tells me.  He’s the damned Prince Regent, after all.  He spent a night of ecstasy with a pair of Wellingtons and he loved it.  But given that I wasn’t seeing any doctors at Princeton Plainsboro and it’s pretty unlikely that I have naphthalene poisoning from termites or a tick in my vagina, the Costanza side of my brain seems to have more weight than usual.

But I don’t have lupus.  At least, not yet.  You have to have four symptoms off a list of a possible 11 to qualify for the diagnosis.  So far as I can tell, I have three.  Which does qualify me for rheumatologist visits every six months until one of my vital organs goes into imminent collapse.  Meanwhile I maaaaaybe have an undifferentiated connective tissue disease, but I also maybe probably have fibromyalgia? Or maybe also/or myofascial pain syndrome? Piriformis syndrome? All of the the above?  Unfortunately, what I definitely 100% do have, and have had for a very long time, is bipolar disorder, and all the drugs that work on fibromyalgia are effective because they futz with neurotransmitters.  As do the two other medications that I’m on, medications that have kept me from being a total basket case for nearly a decade.

You know what’s worse than a parent who is exhausted and in chronic pain? A parent who is manic. You know how I know that? Because I’ve been manic.  And manic people are the worst. Worse than Chris Brown.  Worse than graduate students. Worse than everyone in Keith Olbermann’s book.  WORSE THAN KEITH OLBERMANN.  Depressed, I can do in my sleep.  That’s actually a very precise description — if all else fails, if I’m depressed I can probably just go the fuck to sleep.  But mania sneaks up on you.  There is nothing more terrifying than knowing that if you let your guard down, or your prescription drug coverage lapse, there is something waiting in your brain for the perfect moment to take control and ruin your life.  Stupid fibromyalgia.  I couldn’t have something that could just lead to a relatively benign opiate habit. No, I get the pain that needs antidepressants to treat it.  Which just adds to the impression, one I myself am not immune to, that fibromyalgia is a bullshit diagnosis, is “all in your head” as they say.  It’s not bad enough that I spent the first three decades of my life dealing with the perception that all my mental health issues would be resolved if I stopped acting like such a stupid lazy fuckup who never lived up to her potential.  Now you’re telling me that the pain I actually feel, in my actual muscles, pain that makes my shoulders twist into ropey knots, pain that shoots down my sciatic nerves and stabs me in my temples, pain that makes me be for mercy when something as seemingly inconsequential as my jaw seizes up…is pain that Cymbalta can fix? Man, fibromyalgia can suck it.