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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i want to change the world/instead i sleep

Although I have absolutely no interest in writing a novel and have thus ignored NoNoWriMo for a decade, I fully intended to write at least a little bit this year for this blog.

I failed utterly.

I meant to write about my adventures reading the last 15 years of Marvel Comics in an attempt to better understand the Marvel Cinematic Universe.

I didn’t.

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I meant to write about my obsessive collecting, ever since was I was a child, and how I’ve used it as a way to stave off mania and anxiety, and how often that’s backfired on me.

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I didn’t.

I meant to write a post that has been percolating for almost two years now, about music videos, because that’s obviously totally relevant to the year 2015.

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I didn’t.

I slept.

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My struggles with chronic pain have become more consistently overwhelming than they were in the past. I know there’s an autoimmune component; that’s been clear for a long time. But it’s not specific enough to really find anything to do about it.  Meanwhile, whatever the root cause, more and more afternoons, the only times I have free, are spent with a heating blanket wrapped around my neck and my head, in a desperate attempt to relax the spasming muscles that press on my occipital nerves at the base of my skull for at least a little while, before my children return home and engage me once again in the physical endurance test that is inherent to raising two sensory-seeking autistic kids under the age of 7. The specifics aren’t important.  Suffice it to say, when you combine an obstinate four year old mentality with the need for heavy pressure, everyday tasks become a much bigger physical challenge than anything those sadists at Double Dare ever managed to come up with.  And I don’t even win a new pair of British Knights or a Casio keyboard at the end of the day.

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The fatigue is constant. I find myself drifting off when I’m sitting next to my son in the morning, much like a couple years ago I was drifting off behind the wheel.  I had a sleep study done back then.  Nothing out of the ordinary. No reason for me to be so tired; nothing obviously dysfunctional about the amount or quality of my sleep.

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A few months ago I had a really crappy experience with a neurologist who clearly wrote my symptoms off as psychosomatic as soon as he saw the words “bipolar disorder” on my chart.  He did a standard neurological exam on me, even though I could tell him I wasn’t actually experiencing any of the vertigo or weakness or aphasia or tremor at that exact moment (it takes a little while for a referral to go through, after all), so obviously I would pass.  He told me I didn’t have MS or Parkinsons or Huntingtons, which I knew, and thus he was uninterested.  Tears welled up in my eyes when I asked him why, if there was no obvious neurological cause, I was having neurological symptoms.

He suggested yoga. Or maybe swimming.

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I left the office holding in my sobs.

He sent me for a nerve conduction test, I think maybe as a sop so I would feel like something was being done. If you haven’t ever done a nerve conduction test, don’t.  It involves being poked with a ton of needles and then mildly electrocuted again and again.  The neurologist at the testing site bounded in like an oblivious puppy dog: “Good news, you have no signs of nerve damage!”

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Yes, obviously that’s good news.  I didn’t WANT to have nerve damage.

What I wanted, though, was something approaching an answer.  He gave me none.

I’m starting to feel a little desperate.  I’m flailing. Recently I’ve had wildly fluctuating blood pressure readings.  Could I have some sort of dysautonomia as a result of autoimmune illness?  Maybe, but there’s only one doctor in all of Western New York who specializes in dysautonomia, and she doesn’t take insurance and seems like a bit of a quack. When I called the local headache clinic to see if they could help me with what I’m convinced is occipital neuralgia mimicking a lot of migraine symptoms, I get told they aren’t actually taking new patients (despite their ads on the radio) and are instead referring to the neuro center in Buffalo, over an hour away.

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(Side note: When I hear politicians saying that single payer health care would be a disaster because people in countries with universal health care have to wait a really long time for specialists, I just shake my head.  What universe do they live in, that they don’t realize the same thing happens in this country, we just pay absurd overhead and out of pocket costs for the same shitty care?)

The day I took a shower and the water running onto my face burnt like fire, I got out of the tub and stared at myself in the mirror in shock.  The skin on my face was so red and raw and dry it was peeling off in flakes.  I have to wear two layers of moisturizer, repeated throughout the day.  I really like my dermatologist, she’s an old friend, but there is literally no point to going back to her every time I have an obvious cutaneous autoimmune attack.  Because it means nothing more towards the overall picture; it’s just another checkmark in the same column that gets checked over and over.  When I’m flaring, my skin flares brightest.

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Some days I can’t squeeze the gas pump long enough to fill up my tank.  Whatever is going on in New York State that apparently mandated the removal of the little flip-down bars on gas pumps so you didn’t have to stand there squeezing like an idiot, I’m pretty sure it’s a violation of the ADA.

But whatever.  Some days I can’t squeeze my shampoo bottle hard enough for anything to come out, so it could be worse.

At the beginning of the year, I went to my daughter’s classroom for the yearly open house.  The teacher told us that one of the first activities the class was doing involved the concept of “filling people’s buckets” — some sort of convoluted metaphor for thinking of acts of kindness you can do for other people. Up on the wall were a few rows of orange buckets with semi-legible first-grader handwriting on it.  I scanned the wall, not sure if my daughter would have engaged in the exercise, and after a few seconds I recognized a couple of telltale letters that immediately identified the writing as hers.  My first reaction was shock and pride at the fact that her handwriting was actually better than most of the other kids, and she had written a longer sentence than almost anyone.  Fine motor skills are a challenge for her, and writing long chunks of text are a real source of anxiety.  I was so impressed that she had risen to the task.  And then I read what she wrote.

The way she could fill someone’s bucket was to “be nice to mom because she always hurts.”

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I am broken, and my children know it.

So when they’re gone, I sleep, because then maybe when they’re here, I can pretend not to be broken for a little while.

And that’s why this is my only post for NaBloWriMo.

I suppose there’s always next year.

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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.

Reasons why I should start a blog:

1) Clearly, professional blogger is the perfect job for me. Total no-brainer. Overall I would consider myself an agnostic, at most a believer in a watchmaker god or maybe, to be slightly more generous, an absentee-dad god who drops in periodically, just long enough to toss you five pounds of veal on Christmas…but you can’t help but think the fact that being snarky and pop-culture savvy while simultaneously lacking any sort of healthy boundaries about personal disclosure became a viable career option at exactly the same time that I graduated from college has to indicate something close to fate or kismet. I started my first blog after reading an essay about Blogspot on the back page of Entertainment Weekly in the summer of ’01, sitting on a white couch in an overpriced sublet on the upper west side, typing on my tangerine clamshell iBook, basically waiting for a job to fall into my lap. Which it did. And then I pissed it away, in a glorious spasm of mania and drugs and lust and pure old-fashioned youthful idiocy the way you only can when you’re 22 years old in the most important city in the world and you picture yourself as a bon vivant, as the star of your own movie, when really you’re a dancing monkey with a lithium tremor and a lithium belly to match. But that all goes back to the bit about lacking boundaries. About difficulty using discretion. About not sticking your foot in your mouth. And more than anything, not indicting innocent bystanders who are drenched in your wake. And that brings me to…

Reasons why I should not start a blog:

1) Anything interesting I have to say these days is going to involve my family. My husband, yes, but mostly my kids. And they are nothing if not innocent bystanders. I have funny things to say about politics, about pop culture, about people being Wrong on the Internet…but for the most part, this will end up being a mommy blog, to one degree or another. And I don’t know how I feel about mommy blogs, on the whole. Is it fair to discuss your children in a medium like this? Where everything about their life becomes fair game for bullies and trolls? What if Evan wants to be Supreme Court justice someday? Are my copious posts about his bowel movements going to condemn him to a life as a cowboy-booted stripper? (I will not actually be discussing his bowel movements.) It has been hard for me, over the last ten years, to learn when I’ve said too much. Is blogging not, almost by definition, saying too damn much? I think I have a lot to share that will be enjoyable and relatable, even helpful to other parents of girls with autism, or other women with mental and physical health issues…but you always run the risk of becoming Ayelet Waldman or Heather Armstrong, two other bipolar chicks who had the audacity to run their mouths off about their kids for profit and were promptly crucified by the mommy hordes and the elite bloggers who mock us all from their n+1 parties in Kensington. I’m sure the two of them cry themselves to sleep at night on their piles of money (or, in Waldman’s case, using Michael Chabon’s chest as a pillow and thinking about how much her kids suck by comparison), but I don’t know if I could handle such constant heinous vitriol as I know even mildly successful bloggers receive. It’s hard enough for me to get to sleep at night without having to worry that some disgruntled men’s rights advocate is tracking me by my IP address because I casually mentioned that I think misandry is bullshit (as evidenced by my autocorrect refusing to accept it multiple times: “Miss sandy? Me angry? Please tell me you’re not actually trying to type misandry. Mist and dry??”). But even just thinking about this has me a little bit pie-in-the-sky…maybe someday I could get the flying monkeys of Age of Autism sicced on me! What if I managed to end up linked on some subreddit full of mouthbreathers that don’t like the cut of my jib? Maybe Slut Machine from Jezebel could write yet another unbearable Mommy Wars article that references my disdain for mommy wars articles? To be successful is to invite critique, and on the Internet critique can be both vicious and visceral…but once you get flamed, that’s when you know you’ve made it.

Reasons why I should start a blog:

2) “I want everyone to remember me; I don’t want anyone to ever forget me.” -Madonna

Reasons why I shouldn’t start a blog:

2) “She gave away the secrets of her past and said, ‘I’ve lost control again.'” -Joy Division

Reasons why I should start a blog:

3) No one else has my story. I know; I’ve looked. I’ve looked out there for bipolar mothers of preschool girls with autism who may or may not be on the verge of developing an undifferentiated connective tissue disease. As far as I can tell, I’m the only one. Or else I’m not the only one, but I’m the only one who’s in a position to talk.

Reasons why I shouldn’t start a blog:

3) Some stories I have to tell from my past could implicate other people who, while not exactly “innocent” in any reasonable sense of the term, don’t deserve to have their youthful follies dredged up so I can make hay of them on WordPress for a few cents in Google Ads. And stories I have to tell in the future will involve my beautiful children who, at the time of this writing, actually are pretty darn innocent, although I know that won’t last. I would sorta rather my solipsistic need to “find my joy” just because a rheumatologist made me utterly despondent about my priorities in life doesn’t end up being what shatters their innocence. But there’s never a good time for that. Never a good time to lose your innocence. Never a good time to realize too late that you even had innocence to lose.

Reasons why I should start a blog:

4) Because in 1998 I was sexually assaulted. And after that, the words stopped coming. I had always meant to be a writer, but suddenly, nothing seemed important enough to write about: stupid fucking Sexton-aping poems written in chapbooks while I should have been paying attention to AP Calc; pitiful novellas with epigraphs pulled from Counting Crows songs; my first weak attempts at something that could plausibly be called journalism and put me on track to a career! As a writer! It all became dry and cracked and small like pebbles in the back of my brain. Because I thought my innocence was gone years before, but I was wrong, and I had no idea how wrong until it was much too late. And so the writing stopped. And everything went so crosseyed. I can’t regret any of it, because every individual moment combined together to bring me the two kids I now have, life that I created with my own body and blood to become new human being with thoughts and dreams of their own. But I went off track somewhere that left me without joy.

Reasons why I shouldn’t start a blog:

4) I created life with my own body and blood, and it became new human beings with thoughts and dreams of their own. And I will now exploit them, for my own gain, for the therapy it offers me, for the gloating warmth I feel in my chest any time someone complements the one-liner I managed to post on Facebook during one of the very few free moments I get from sunup to sundown. One of those rare moments that I forget that I’m running a marathon I didn’t train enough for and now my metaphorical toenails are falling off. The moments I am a human and not just a mommy, but with a humanity shaped so vigorously by mommyhood that it would be impossible to wrestle the two apart for even a second. Is it just too selfish for words?

Reasons why I should start a blog:

5) “I want everyone to remember me; I don’t want anyone to ever forget me.” -Madonna

Reasons why I shouldn’t start a blog:

5) “I want everyone to remember me; I don’t want anyone to ever forget me.” -Madonna