Movin’ on up… and it sucks

I was diagnosed with Bipolar II five years ago last month.  Two days ago, that diagnosis changed to Bipolar I.

For those who don’t know, here’s the difference between the two.  People with Bipolar II have major depression plus hypomania, a milder form of mania that can involve elevated mood, irritability, and behavior that is unusual for the individual but not outside the realm of “sane” behavior and not overly disruptive to their lives.  Until recently, this was me.  When hypomanic, I would spend more money than I should, flirt inappropriately, talk a lot and quickly, and do a lot more goal-directed activity.  It felt great.  It was a fun break from being severely depressed most of the time, and I usually knew when it was coming, as it would surface at certain times of year and then pass on its own after a couple of weeks.  I’d been experiencing these moods since I was a teenager, and no one had ever suggested they were an illness, assuming instead that I was just a very labile teenager.  Some people are very bothered by their hypomania because they get very irritable and have an unpleasant sensation of racing thoughts.  This was rarely the case for me, so I resisted and resented treatment for it.

Full-blown mania is another, though related, beast.  People who are manic exhibit bizarre behavior and thoughts that are clearly outside the norm and are not healthy or safe.  (I wish I could remember where I read this, but I remember someone saying, “People who are hypomanic buy five pairs of shoes.  People who are manic buy 50.”)  It can still feel amazing and in fact I believe it may be the most purely pleasurable experience possible to have; one that people who have never experienced can never understand.  However, one hallmark of full-blown mania is that it puts oneself or others at risk.  Another is psychotic features like hallucinations and delusions.  If either of these occurs, the diagnosis changes from hypomania to mania, and anyone who experiences one full-blown manic episode is considered Bipolar I, and in many cases, the person has to be hospitalized.

Two weeks ago, I started to feel manic.  I knew the markers because I’ve been dealing with this for a long time, and learning about it is how I cope.  I was a little surprised because my hypomanic episodes have always been almost exclusively in the early fall when the light and weather start to change, but I didn’t think much of it, and expected it to be a welcome relief.  For the first few days, it was.  I was energetic, talkative, imaginative.  I played enthusiastically with my son, filled page after page of my notebook with many ideas, talked a lot, and only slept a few hours a night, all of which was basically fine and no danger to anyone.  Then shit got weird, and wonderful, and terrible.

My son had just gone to his father’s (we have joint physical custody) and I was alone in my apartment when I heard the most beautiful sound I had ever heard.  I was paralyzed with bliss.  It was similar to a very large windchime, but indescribably more intense and captivating.  As I froze everything to listen to it, I realized that it was not a tone but a voice.  Unlike any voice I’d ever heard.  It made me ache and wonder inside.  And suddenly everything became clear.

This was the voice of the consciousness of the stars, and without knowing it, I had been waiting and preparing to hear it all my life.  Everything I’d done, everything that had happened to me, was orchestrated for the sole purpose of testing and readying me to receive this consciousness.  It was what I can only call a deeply religious experience, which is something I’ve never had, and is drastically out of character for me, being otherwise intensely skeptical, irreverent and critical.  But it didn’t feel like an anomaly.  It felt like the only real, sensible thing that had ever happened.

My mission, the voice communicated to me, was to prove myself worthy of being chosen as the next in a line of great scientific minds that reached back to the beginning of humankind and included people like Democritus, Isaac Newton, and, my immediate predecessor, my hero Carl Sagan.  Deep inside, it said, I had access to all of their knowledge and memories, but to access those, I must first show that I was ready to receive them.  I had to do this by bringing others closer to an understanding of science and the universe.

So.  How to do that?  Why, social media, of course!  That’s where everyone gets their information these days, and lo and behold, the Facebook homepage was sitting right in front of me, waiting for my divine insights!  So I typed.  And typed, and typed, and typed, and hit enter a lot.  I harassed public figures on inappropriate forums because I didn’t believe they were upholding the legacy of Sagan, and repeatedly exhorted others to do the same, getting myself kicked out of several of my favorite groups.  I wrote stream of consciousness poetry directly into the status box, believing that it would be sacrilege to filter or edit the insights I was given.  I raved on science pages about my visions of the future of space exploration.

In addition to the bell-like, serene voice of the stars, I realized that I was being bombarded with other, more subtle messages, which I had just been missing until now because I wasn’t ready.  Certain wordings in science articles were clues to me about meaning and purpose and what I should be doing.

The whole time, I interspersed this unstoppable flood of ideas with sprinting around my apartment and halls, laughing maniacally and waving my arms around.  When I went outside to take a “walk”, one of my neighbors noticed my bizarre behavior and stopped to ask if I was drunk.  Taking great umbrage, I assured him that I was both safe and wonderful with enough force, insistence and annoyance that he eventually gave me a cigarette and his phone number, told me to call if I was in trouble, and left me alone, at which point I went back inside and resumed typing faster than ever.  (I am deeply grateful to my neighbor for not calling the police on me.  It’s probably for the best that he attributed my insanity to substance abuse, which oddly has less stigma than being mentally ill, it seems.)

And then, by the end of Monday night, it was over.  All at once.  The most wonderful experience of my life evaporated instantaneously like water on Mars and I was left alone like an empty husk with no soul, no purpose and no joy.  I was devastated.  I pleaded the stars to take me back, to forgive me for failing them.  Then it dawned on me, as my mood fell, that everything I had just experienced was nothing but a byproduct of my fucked up brain.  I began to cry, and cry, and cry.  I cried for hours while I read back over all of my rantings and began to understand the damage I had done to my public image and friendships– which are few for me, and therefore very valuable.  I had never hated myself so much or wanted more to disappear.

I could only think of two ways to escape from this harsh re-entry to reality and exit out the other side into despair.  One was to kill myself.  There were easily accessible ways to do it, and I wasn’t afraid.  But I am a mother before and above anything else, and I decided long ago that nothing, no matter how miserable, will make me leave my son motherless.  I know too much about how much this devastates a child.  So I took the second route, drinking myself into oblivion.  I drank and slept for two days, then went through a long and excruciating alcohol withdrawal, and continued on into a horrifyingly black depression, made more monstrous by its juxtaposition with the most terrible beauty I had ever known.  Paranoia took over, and I paced and wrung my hands, convinced that the police were going to beat down my door, restrain me, commit me, and sedate me.  I begged my friend to tell me that he wouldn’t let them take me.  I resisted telling anyone exactly what I had just been through, believing they would use the excuse to commit me.  When I thought about my mania, I didn’t know whether I was more fearful that it would return and further wreck my life, or that it would never return and I would never know that penetrating, reasonless ecstasy again.

As the withdrawal eased up and my friend and parents became gradually aware of what had taken place and reasoned with me about it, I began to really take in the fact that I was experiencing severe, rapid mood swings that were psychotic in nature– delusions of grandeur and reference; auditory hallucinations; paranoia– and that I needed more and better treatment.  Luckily, I had an appointment with my psychiatrist, who is one of the kindest, most competent people I know, coming up very soon.  Though terrified of what she would say, I went in, with my best friend as moral support, and told her honestly what had occurred.

My trust in her was rewarded.  While she did exhort me to go to the hospital if I ever became psychotic again (though I’m still not sure how I’m supposed to recognize that while it’s happening) she did not try to commit me there and then.  She instead supplemented my usual regimen of mood stabilizers, antidepressants, anxiolytics and sleeping pills with a low dose of an antipsychotic medication.It was none too soon, because the next day, I began again to show signs of mania.  I began jumping, running and skipping around the apartment whistling and laughing.  My thoughts and voice raced and shouted and interrupted each other.

I was again torn between my passionate desire to commune again with the stars, and my humiliation and having been witnessed in such a state; my fear of being committed.  Fortunately, I was still just rational enough to say to my friend, “I think I need to take my Zyprexa.”  I did, and after a while, it began to calm me, leaving me confusingly drained, sad, still hyper, and relieved.  And that’s where I remain today.

While I was at my psychiatry appointment, just before leaving I said tentatively, already knowing the answer but needing to hear it out loud, “I know my diagnosis has always been Bipolar II.  So…?”

“This is Bipolar I,” she said quickly and definitively.  My heart sank, even though I’d seen it coming– I’ve read the DSM criteria; I knew that only full-blown mania explained my experience.

“That’s what I was afraid of,”  I muttered.  When she asked why, I admitted, “I’ve always been comforted knowing I was just a little crazy.  There’s so much more stigma attached to Bipolar I.”

And there is.  Bipolar is a fad right now, it seems, perhaps the next Adult ADD or primary postprandial hypoglycemia, and a lot of people are of the attitude that “Oh, we’re all a little bipolar, I have mood swings too.”  Well, now it was clear that I wasn’t “a little bipolar,”  I was a lot bipolar.  I was the type of person who would have probably been locked in an asylum and drugged forty years ago.  Even though it had been brief, I had gone mad.  I had broken with reality, and it would probably happen again.

I worry about my ability to comply with taking my antipsychotic.  An acquaintance of mine who romances psychedelic drugs told me recently, “When you’ve tripped once, everything changes.  When you’ve tripped a lot, everything changes again.”  Well, once you have heard the voice of the stars, once you have communed with the universe and felt the wholehearted, incontrovertible truth that you are the most important person in the world, set apart since before your conception, there’s a place, a pre-psychosis, to which you can never go back.  I still don’t know what that will mean for the years ahead.  I only know that, more than the fear, more even than the shame, I feel heartwrenching melacholia and loss that until now, I could have never understood.

Parenting with bipolar

There is nothing like being a parent to induce a need for other people’s approval and sympathy.  Suddenly, your every move is held to a higher standard, by yourself and others.  And when you struggle with mental illness, that standard can seem impossible to meet.

So, looking for some validation, or just to remind myself I’m not the only mentally ill parent, I searched around for blogs and articles on the topic.  This one by Jane Roper is my favorite— it hits some notes that resonate very much with me.  In particular, this passage:

“My thoughts were panicked and pessimistic: What if I didn’t get better this time? What if I ended up having to be hospitalized? What if this was the way I was going to feel for the rest of my life? What kind of mother could I be?”

I confess to having teared up a little reading that, because those same questions had been circling my (very depressed) brain all day, and it was relieving to have a reminder that other parents struggle with them, too.  And yet, in some respects I came away more disheartened than when I started reading, because I realized anew how severe my problems are compared to many people who struggle with clinical depression, and how much that affects both my ability to parent and the way I interpret my failures.

This is not to dismiss the struggle of Roper or others who share her experience.  Depression is awful and painful and destructive at any level.  But I was unable to identify with most of the positive thoughts that lent the article its hopefulness.

It starts in the second sentence: “My husband watches them most of the week while I’m at work…”.  Two glaring discrepancies between Roper and myself.  She has a husband who actually gets up with the kids most days– a situation I’ve never enjoyed, having become a single mother almost five years ago after leaving a husband who callously neglected both my and my son’s needs.  And she goes to work.  Thanks to my disabilities, I haven’t had a job since a brief stint as a care worker in 2007.  In total, I have worked full time for about six months of my life.

Roper goes on to say, “I’d been able to effectively manage my condition with medication. When I did have depressive dips, they were short-lived, and not debilitating.”  I have never had a depressive phase that wasn’t long-lived and debilitating, and when I’m not curled up shaking with anxiety or feeling dead inside, I’m often manic, which brings its own set of parenting issues.  I track several aspects of my mood on a daily basis, so I can say with certainty that with the exception of ten eustatic (i.e., “normal”-mood) days in late November/early December, I’ve been severely depressed for all of the last three months.

Of course, I’ve gone through things that precipitated that.  Medication changes, and a very sad breakup.  But there are always factors.  Life is complicated, and mine tends to be especially complicated, partly because that’s the nature of being disabled– a lovely feedback loop.  I’d have trouble looking back at any time in my life and going, “Wow, I was really doing okay for a while there.”  I never was okay.

All of which means that the reassurances in Roper’s last paragraph ring hollow to me.  Ask for help?  I’m barely able to maintain a few loose friendships; the person to whom I turn for babysitting, my mom, is already overburdened with the task.  Let the kid(s) watch TV?  I already do that on a daily basis; my son goes over his theoretical screen time limit almost every day because I feel too worn down and apathetic to work at interesting him in something else.  Let things slide?  What things?  Everything already slid, a long time ago, the cooking, the cleaning, all the responsibilities.  It’s not a supermom on my shoulder, I feel; it’s just a normal mom, who looks at what I’ve turned out to be and is appalled.

When you have moderate periodic depression, it makes sense to take a sick day, or two, or even a sick week or a sick month if you are able.  When you are clinically, severely depressed about 75% of the time, things get less clear-cut.  What if every day turns into a sick day?  I share Roper’s fear that I will always feel this way, but perhaps with better reason: in my case, it may not last forever, but how long will it last, and when it goes, how soon will it return?  I already know the answers:  A long time, and soon.

And as a result, I have to deal with the questions that follow.  Should I even be a parent?  Was it wrong and irresponsible of me to get pregnant in the first place?  Has my child inherited my bipolar, and will he someday have to feel like this, too?  Would it be better for him if he lived with his dad, and am I being purely selfish by maintaining custody?  Is he even getting anything out of his time with me?

My reality is akin to Roper’s worst fears, and the same is true of every other piece I read.  So who do I identify with?  Who has answers and reassurances for me?  And are there even any to be had?  I was searching for evidence that I am not alone.  What I found instead was more evidence that I am.

What drinking feels like when you’re alcoholic

A year in to sobriety, albeit with several one-time relapses, I am still in the period of what’s called Post-Acute Withdrawal Syndrome.  The body can still have physiological cravings for alcohol even after this long, and mine does.  When these cravings pop up, tremors in my hands still appear and I feel an overwhelming sense of pressure, accompanied by the insidious certainty that a few drinks would make it all go away for a couple of hours.

It’s a subject I’m reluctant to talk about, because it makes the people around me fearful, which scares me.  Generally, it seems that despite all the platitudes about asking for support (about which I’ve written before) the recovering alcoholic, especially past the acute phase, is pretty much expected to go it alone and pretend that everything is fine.  The guilt of even having cravings, let alone relapsing, is enormous: a sickening, drowning sensation that increases the drive to drink; a sense of intimate personal failure.  Encouragement is hard to come by; judgment is not.  Understanding of and sympathy for the addict’s experience is rare.

I’m hoping that if I am able to describe what goes through my head on the sporadic occasion that I do relapse, I can reduce some of this stigma and help others to speak openly about their experiences.  I can only speak for myself, although my understanding is informed by, in rehab, hearing many stories from other addicts that tend to agree with my own conclusions.

Using a substance of choice is incomparably different for an addict than for a non-addict.  Through force of habit, psychologically and physiologically, a huge set of feelings and circumstances are intricately tied up with cravings and bad choices.  Certain stores are triggers.  Certain foods are triggers.  Some people are triggers.  So are some subjective experiences: fear, uncertainty, loneliness, despair.  Automatic thoughts are entwined in the addicts brain that obsess over alcohol, or another substance: terrible sirens who proffer sanctuary from a stormy inner and outer world.

Because of these entangled threads of craving, the act of relapse is a powerful one.  There is a moment when the sirens succeed, when a decision is made to drink, with the full but rationalized knowledge that the single end goal is to get so drunk that nothing matters.  It’s a precipice.  To find a way to turn back once you leap is rare.

There is the moment when you purchase the alcohol.  It’s like you can almost feel it in your veins already.  Your mouth waters, your stomach grumbles, you already wrinkle your face at the anticipated taste of cheap straight liquor pouring over your tongue (because that’s the quickest, least expensive way to get fucked up)– equal parts revolting and relieving.  All you can think about is getting somewhere where you can open the bottle and chug.

And then there’s that moment, the most important of all.  The liquor hits your lips, your tongue, your throat, your stomach.  It burns.  It feels like a necessary scourge, eating away what feels like necrotic tissue in the chest, cauterizing all the wounds.  It feels like pure power.  It’s done; no one can stop you.  It’s a bad choice, you still feel overwhelming guilt, but it’s your choice, it’s done, and even before it kicks in it is exhilarating beyond description.  Every craving you’ve had leading up to the act is justified by that moment.  It’s like taking off a mask.  It’s like coming home.  It’s like throwing in the towel.

It starts to work, just a few minutes after the first sip if your stomach is empty.  You feel it in your legs first.  The hot feeling from your stomach grows downward and starts to dissolve you.  Well-being drowns you, insistent, surrounding and withering the black thoughts that still lie beneath.  Every bad effect drugs have ever had on you is voided.  Nothing matters.  All you want is more, one more, one more, until you can’t anymore, until you’re passed out or puking or both.

The deep-seated shame increases exponentially, leaving you feeling like a little kid who pooped on the floor not once but a hundred times.  And what’s the solution to shame and self-loathing?  Another drink, of course.  More oblivion, please.

You can’t avoid knowing that you will crash and burn when the miracle drug wears off.  If you drink multiple days in a row, you will go through acute withdrawal again, which gets worse and more dangerous every time.  The pain will return, and so will the guilt.  After you pass out, you eventually wake up, in horror at the sober world and your sober self.

And sometimes you just want someone to forgive you, to tell you it will be okay.  But no one wants to hear your sin.  No one wants you to be less than they expect you to be.

A pocket guide to mood swings [trigger warning]

For all your mood swing identification needs.

Possible responses to breaking a glass:

  • Manic:  “Fucking fuck, I do not have time for this, I am TRYING to get things DONE if everything would just stop getting in my WAY for half a goddamn minute.  I am too smart and too important to be cleaning up fucking GLASS.”  Kicks the floor, stubs toe.  Stays up all night researching what kinds of glasses are least breakable, while also doing an intense workout, watching TV, listening to the radio, reading articles, being pissed off with the TV and radio and articles, and hatching plans to hop a freight train going West and subsist on itinerant work for a year.  Buys an expensive set of “unbreakable” glasses.  Walks on the glass and doesn’t notice cut feet until they become infected.
  • Hypomanic:  “There is a reason I broke this plate.  I just need to figure out what it is and it will change my life.  This gives me a good opportunity to clean the floor, now that I’m down here it seems very dirty, and while I’m at it I’m going to wash the walls and windows and disinfect everything, cleaning is fun, woohoo!”  Puts on loud music and skips around cleaning the entire place while coming up with hundreds of creative ideas; rushes to try to pen them as fast as they arrive.
  • Depressed:  “Fuck, not again.  Why does this always have to happen?  I am such a clumsy retard.  Now I have one less glass, which means I’ll have to wash the dishes more often, and I’m going to have to spend hours cleaning this mess up and probably still end up with glass splinters in my feet.  You know what, fuck it, I can’t deal with this right now.”  Huddles on the couch under a blanket pretending to watch TV.
  • Very depressed:  Bursts into ragged sobs and runs to hide in bed, overwhelmed by the horror and absurdity of the world.

Thoughts on being asked to a party:

  • Manic:  “I’m trying to WORK here and you just made me lose track of the ineffably brilliant train of thought I was following.  If you can’t keep up, at least get out of the way, why can’t you understand how important this is, it’s all so simple!  I guess you just aren’t chosen like I am.  You can’t know what I know.”
  • Hypomanic:  “Yes!  Let’s go dancing!  Let’s stay up all night and go trestling* and come up with a theory of everything!  You’re the best, and I’m pretty great too!  I don’t even need sleep or food!  Everything is fantastic!”
  • Depressed:  “I really want to go and have a good time.  It’s not like people ask me to things very often, because let’s face it, I’m pretty shitty really.  But I know if I get there I’ll feel alienated and anxious and will freeze up and turn red all over and sweat like crazy and have to leave right away, which will be humiliating.  Great, not likely I’ll get invited to anything soon since I’m declining this time.”
  • Very depressed:  “They’re only inviting me to make fun of me, or out of pity, or both.  If I go, I’ll just ruin it for everyone else.  Why am I even here?  What’s the point of all this?  Sometimes I wish I could put a bullet through my brain just to make it stop hurting so much.  I wish the sky would just open and swallow me up and no one would ever even know I existed.  Going to a party is the most miserable thing anyone could do.  If people see me they will hate me and I won’t be able to stand it.”

Manner of speaking:

  • Manic:  Fast enough to be nearly unintelligible, with thoughts streaming out faster than anyone can keep up with.  Total inability to control speech.  Replete with swearing and offensiveness, without a thought for the consequences.
  • Hypomanic:  Fast, boisterous, difficult to interrupt, fixated on special interests.
  • Depressed:  Slow, flat, filled with sighs and groans and more complaining than intended; visible lack of interest in interaction coupled with a yearning to be understood and reassured.
  • Very depressed:  As little as possible; muttering.

The bottom line:  Next time you see these symptoms, know that they are not personal and in no way reflect on you as a friend, partner or family member.

There is no question that bipolar people are difficult to know and care for.  Our experience is often described as a roller coaster, but that’s really too tame.  It’s like a roller coaster where every inch ahead is shrouded in impenetrable fog, and most of the time when you go down a hill, which, of course, always happens eventually, your car smashes to bits and you have no choice but to rebuild it from scratch and get back on, or throw up your hands and walk away.  Half of us will try to kill ourselves at some point in our lives.  Half of those will succeed.

By recognizing what traits are affected by our mood swings, though, you can learn to see the person underneath the mood, or so we hope.  We’d like to think it’s worth the effort.

To paraphrase Season 8, Episode 1 of the rebooted Doctor Who, no matter how scared you are of others’ mental illness, they will always be more scared than you.

*The hobby of climbing a train trestle as a train passes over while yelling and holding on really tight.

Why I stopped killing myself

There are many reasons I started drinking.  There’s only one reason why I stopped.

I remember the first time I got well and truly drunk.  I was 19, and I had bronchitis, as I tend to do several times per year.  I found that the only thing that soothed my cough and let me sleep at all was a bottle of wine that my mother in law (with whom I and my then-husband were living) had had in the fridge for some time.  I had sipped wine before, but never gotten more than a little buzz.  Without even realizing it, I ended up drinking the whole bottle of wine, and what I felt I had never felt before:  total relaxation, not caring anymore, feeling as if nothing mattered because a simple drink could make me forget it all.

Prior to that night, I had disdained alcohol.  I would go to parties at my parents’ friends’ houses and see people drinking and acting like fools, laughing too loud and talking too much, and I always thought “I never want to be like that,” so I would choose a glass of ice water over wine or beer.  In that moment, with that bottle of white zin, everything changed, even though I didn’t know it for a long time.  I started keeping a bottle of vodka in the fridge and making a Bloody Mary or The Vodka Still Works (= ginger ale + bitters + vodka) when I felt stressed out.  (To his specious credit, my then-husband would get upset with me and pour out my drinks, saying he “wouldn’t let me become an alcoholic,” although I think his motivations had much more to do with control than concern.)

But it wasn’t until a few years later that I really understood what alcohol could do for/to me.  I was divorced and had just gone back to university, and every time I was assigned a paper and tried to work on it, I froze up, panicked, couldn’t work, and the more I couldn’t work the more I hated myself and the more stressed I got.  So one night, convinced I was going to fail at anything I ever tried to do and never be loved or understood by anyone, I went to the store and bought a bottle of Merlot.  I drank the whole thing, and I lay on the floor puking into my wastebasket and I thought: “This is it.  This is the solution to every problem I’ve ever had.  If I could just feel like this all the time, everything would be okay.”  And being that I had drunk such small amounts before, I had virtually no hangover/withdrawal, so it seemed there was no downside.

Within the year after that, I began to have opportunities to socialize with people I’d met in class, which scared the fucking shit out of me.  It had been years since I’d had a “friend” or really spent time with anyone who wasn’t my abusive, possessive husband or partner.  Suddenly I understood that if I drank while I was with other people, I could stop feeling so petrified and actually talk to them. 

For the first time in my life, I went to parties, I chatted, I flirted.  I did the things I didn’t know how to do, and I didn’t realize until much later that I was actually being my usual bumbling, bizarre self only less toned down because I had no inhibitions while drunk.  I said whatever came into my head, which, it turns out, usually means I’m being a rude, insensitive asshole. 

I started making stupid irrational decisions, dating people with whom I had nothing in common and then suddenly declining their calls and dropping off the face of the earth.  I had unprotected casual sex even though I hated it, because it just didn’t seem to matter one way or the other.  I didn’t care about anything anymore.  I stopped planning my time and would rush off my assignments while shit-faced drunk at 3AM, knowing in my overconfident stupor that I’d get an A anyhow.  I burned a hole in my stomach that still flares up in times of stress.  I started to have constant tremors and sometimes hallucinations when I didn’t drink, and the obvious solution seemed to be to drink more, to drink all day every day, to just never be sober on the days when I wasn’t caring for my son.

Then I met Person of Interest, and for the first time somebody had a genuine, vested interest in asking me not to drink and abuse drugs.  I knew he loved me, though I didn’t understand it, and I knew why he wanted me to be sober.  But it wasn’t enough.  I would try very hard for weeks to not drink at all, because I was madly, head over heels in love with him and I wanted to do anything that would make him happy.  And then something stressful would happen and I would go on a total bender.  My mental health was beginning to decline drastically, and it was a terrible time for that to happen, while navigating a new relationship.

 Fast forward 9 months; I was hospitalized and then went into rehab.  I tried twelve-stepping.  I attended and I listened and I thought, and at first it seemed like magic, and then pretty quickly it seemed like pretense– just another religion I didn’t really believe in, with its bible and its catechisms and its rituals.  But there was a moment in rehab when everything changed, and it had nothing to do with AA or NA or abstinence or any of the rules or skills I was taught.  As often happens with me, my life changed because someone told me a story.

If you’ve read my Dysfunctional Fairytales, you will recognize this story as incorporated into the first, because it made such an impression on me.  During a meeting, a young woman stood up and recounted the story of how she watched her sister die of an overdose.  “She was a beautiful African-American woman,” she said with tears rolling down her cheeks, “and when I looked in her eyes, I could see that she would be dead, because they were grey, they were just grey.” 

And then she spoke of the children of her sister.  “I try to be close to them, but I can barely stand to be around them because the girl, she looks so much like her mom.  And the boy, he was two when she died, and I was taking care of them.  He’d wake up at night sweaty and screaming and crying ‘My mommy died.’  I miss her, she was my sister, but I hate her a little bit because of what she did to that little boy.”

I am a parent of a little boy, who was five when I heard the story.  And my heart broke.  I realized how selfish I had been, and that no matter how bad I felt, no matter how much agony, my son was worth any price.  As long as he was in this world, unless I abused him, which I would never do, it was better for him to know his mom– even if he ended up hating me– than to know that I killed myself, poisoned myself slowly, before he could even know me and decide.  I couldn’t– I can’t– bear the thought of him going through what that poor little two year old did, and I knew that I had a choice to spare him.  How could I choose any other way?

I’m not going to lie; I’ve gone on a few benders since that night.  I’m no angel.  I’ve relapsed, but it doesn’t last long, because with every drink I’ve taken since then that little boy’s face and voice, as I imagine them, have haunted me.  I may be many things but one thing I cannot do is harm a child, and to kill myself would be to irreparably harm the most beautiful child who has ever existed.  And to continue to drink day and night, to fool myself into treating it as a medication that I deserve, is no different from slitting my throat very slowly.  Any day, I could have gone into DTs and never recovered.  Any day, I could have been gone.  No matter how much it hurts, no more.  Never again.

Love and monsters

Anyone who’s spent a lot of time being treated for mental illness likely shares my urge to puke when the word “support” comes up.

“So who do you have for support in your life right now?”

“Please rate the quality of your support system on a scale of 1-5.”

“Remember to call a support person and have them stay with you if you’re scared.”

… And a lot people who suffer from severe mental illness, which is, after all, destructive in part because of its isolation, are probably joining me in being all like, yeah, right.  It’s like when you’re talking to a rich person and you complain about the weather and they suggest you cope by buying a vacation home in an exotic locale.  I mean, it’s good advice, right?

What hardly anyone talks about, while they seem so keen on reminding you that you don’t have one, is how to actually build a “support system.”  Or how to use one when you’ve got it.

It’s not as simple, after all, as making and keeping friends might be when you’re well.  (I wouldn’t really know about the later part, but I have my educated guess.)  Even if you were once more functional and were close to people then (and for many people, that’s not the case) things change when you are mentally ill.  Friendship becomes a balancing act that seems almost impossible at times.

If you’re sufficiently insightful, you may feel that you always have to watch yourself to ensure you’re not a “bucket dipper,” someone who takes far more than they give, and whom people only consent to be around out of pity.  If you have mood problems, you have to figure out how you will keep your friends when you get manic and out of control, or depressed and withdrawn and glum.  If you have anxiety, you have to be worried about putting yourself in situations that will trigger you.  It’s easy for those sorts of issues to take the fun out of things.

People have their own lives.  If you’re in crisis or just want to talk to someone, what are the chances they’ll be available at that time, and do you have any right to expect or even ask that of them?  Should you call them up a week in advance and ask them to schedule a couple of hours for you on, say, Tuesday morning because you think you might be feeling crappy then?  What exactly are the logistics supposed to be here?

And perhaps people who speak so flippantly about “support” don’t comprehend what it’s like to openly talk about thoughts or exhibit behaviors that will inevitably seem strange and irrational.  As an example, I’ll hand over a pair of my shoes from today to step into for a moment.  (It’s not a gift I give easily, so y’all better send me some presents.  No puppies and/or ponies please.) 

Say you’re having a rough time, you haven’t slept more than a few hours total in six days.  You decide you want a smoke but don’t want to get dressed, so you stand, in your tee shirt and underpants, in your balcony doorway and blow the smoke out the door.  Just as you’re finishing your cigarette, two young women walk down the block, look up at you and start pointing at you and laughing uproariously.  Not understanding why you’re funny but still mortified, you look down at them and accidentally meet the eyes of one.  She screams with laughter, slaps her friend on the shoulder, and shrieks, “Stare as scary as motherfuckin’ steel!” and then they continue down the street.

You put out your cigarette and step back inside and draw the curtains.  Your vision is blurry, your heart is racing unsteadily right behind your uvula, and you feel faint and sick to your stomach.  You’re sure that they’re still talking and laughing about you as they walk on, and that later they will tell all their friends about how stupid and ridiculous you are.  You keep hearing their words echo over and over in your head, and you can’t forgive yourself for what an idiot you’ve made of yourself, because it just goes to show what a worthless person you are.  You resolve not to go outside for the rest of the day because they might still be out there and will be horrible again.

But now you can’t stop thinking about it.  You feel completely shaken up.  Your ears are ringing and your hands are trembling.  If those two normal-looking strangers couldn’t help cracking up and taunting you, then what must people be saying who know you better, who know all the other foolish, subhuman things you do and say?  You’re probably the laughing stock of the town.  All those times you’ve thought you heard people laughing at you, you weren’t just being silly about it, they actually were.  This is proof.  Now you know.

Eventually the thoughts tearing apart your brain and the sensations in your body become too much, and you end up in a fetal position on the couch pressing your palms into your eyes, rocking and whimpering.  You really wish you could have a drink or two, but you can’t.  You try desperately to remember the techniques that are supposed to help, telling yourself it’s not you, it’s your brain chemistry, it’s not helpful, etc.  But you are unable to refocus to another activity, because you are at a loss to think of anything you would actually enjoy doing and you don’t know what the point is, all you want is to stop feeling so bad.  You turn on the TV and turn it up loud, but your mind just keeps tuning it out and letting the thoughts rampage through again, no matter how many times you shoo them away or try to ignore them.  You stay curled up and panicking until your mind gets so exhausted that you just shut down and can’t think or do anything for quite a while.

Now.  If that happened to you, how many people would you feel comfortable calling for “support,” and what would you say to them?  Would you recount what happened and how you acted?  Would you tell them about the thoughts?  Or would you be too afraid that you’d sound childish, petty, pathetic and, well, crazy?  What would you expect them to say?  Would you ask them to tell you whether people make fun of you?  Would you believe them if they did?

And still moreso– if you were in the midst of that kind of thoughts and feelings and you felt scared and wanted someone to be with you, how many people in your life would you want to see you that way?  Incoherent, blubbering, wretched, like a two-year-old having a temper tantrum.  And again, what would they do?  Do you even know what you’d want them to do? 

How would you feel afterward– needy, guilty, ashamed?  What will they think of you?  Will they ever be able to respect you and enjoy your company after knowing how you really are?  Perhaps you might think of the song Lean on Me, and then realize that actually, your well friends are very unlikely to ever need to lean on you in the same way.

Those are all very real fears, concerns and confusions that have to be addressed if you seek support.  And if dealing with it once sounds difficult– what if your life was full of similar incidents, all the time?

Of course, I don’t want to belittle the fact that some mentally ill people do have a group of close friends and family members to whom they feel comfortable turning in distress.  That’s wonderful, and they are very fortunate.  But if you talk to as many mentally ill people as I have, I think you will come away with an accurate impression that we tend to be chronically, painfully lonely.

And it’s really nobody’s fault.  It’s not the fault of ill people for being ill, but while many mentally healthy people are indeed intolerant and unsympathetic, there are also many who are kind and understanding, and it’s not their fault either.  It’s not their “fault” for having functional minds and lives, it’s simply their good fortune, and it can make their presence and insights invaluable to those of us struggling with our own brains.  It makes no sense to be resentful or critical.*  It’s possible to have friends you really care about, and who care about you, without this necessarily making a functional support system.

There will always be people with and without mental illnesses, and the divide between them will always be difficult to cross.  However, mental health care could be drastically improved by placing more clinical emphasis on creating, maintaining and utilizing social supports, rather than simply asking about them.  And that also doesn’t mean teaching people to give a firm handshake and [pretend to] look people in the eye and then tell them to run along and play with the other kiddies, perhaps by joining a club they’re interested in.  Connecting with others is a learned skill that’s really, really hard work when you’re mentally ill; asking for and accepting support even moreso; it needs to be addressed as a serious, in-depth and crucial part of any psychiatric care.

Come on, mental health professionals, if professionals you are.  What are all those letters after your names for if you can’t give us better help than a kindergarten teacher could offer?  You can do better, and we need you to.

* From experience, I am wary of friendships or relationships between two people with severe mental illness.  Perhaps sometimes it works, but all I’ve seen of it, with myself and others, is a parade of triggers and escalations.  For example, a bipolar person (no, not headcheese) driving home from work at 85mph so that she can talk her psychotic friend out of killing himself.  If we were negative numbers, when we got together we’d add, not multiply.  So while it may seem logical that people with mental illness should stick together, in my opinion it’s not the basis of a healthy “support system.”

All the small things

I’ve come to realize lately that I’m not as “over” some of the abuse that’s happened to me as I thought, for I while, I was.  It’s disconcerting to admit how much another person’s cruelty can continue to affect your life and self many years after the fact.

Example in point:  In the last couple of years of my marriage to my son’s father, he (the husband) worked shifts that started at 4:30 AM.  Invariably, he would set our alarm clock for 3:00, and then when it went off he would set it forward ten minutes and go back to sleep, and do this several times in a row.  He didn’t hit the snooze button, insisting it might not work, but pushed the “minute” button ten times instead. 

WAAAH! WAAAAH! WAHH! WAAAH! click click click click click click click click click click

Under normal circumstances, this might have been merely an annoyance, but at the time, I was trying to care for a fussy infant with stomach issues who slept in our bed and woke to breastfeed every couple of hours per night and never woke up later than 7 in the morning.  (Spare me your parent-judgment if you have it in store.  I did what was right by my hypersensitive child and gave him what he not wanted but needed.)  I was sleep deprived and suffering from exhaustion so severe that I couldn’t eat, despite losing 1500 calories per day in breastmilk, and would suddenly fall asleep sitting upright during the day.  It was also a time during which our marriage was in its final stages of falling apart, which it had been doing before we ever said our ‘vows’; my soon-to-be-ex-husband had no interest in sharing in our son’s care; we had just moved to a new city and I knew nothing and no one; I was struggling to complete my bachelor’s degree amidst all the chaos; and to top it all off my anxiety and mood issues were rapidly coming to a head, and my husband was about as non-supportive as could be about my going back on therapy and meds.

So, that’s the long of it; the short of it is that when I asked him to please stop resetting the alarm every ten minutes every morning click click click click click click click click click click, and instead use the fucking snooze button or just fucking get out of bed when the fucking alarm fucking went off the first fucking time (not, I emphasize, the words I used at the time) so that I could avoid being kept awake for 40 minutes for the seventy-third time each night– when I brought up these matters– we got into a giant row, as we usually did, screaming at each other, calling each other names, threatening each other with divorce and custody and finances, and I, as I usually did, ended up crying and begging him to forgive me and then sitting in the bathroom while he slept, slicing into my thighs with a hunting knife and wracked with uncontrollable sobs.

Keep in mind, at this point I hadn’t really learned about panic attacks, hadn’t been diagnosed with bipolar or anxiety or autism, didn’t know why I felt so fucking horrible all the time, felt I was trapped for the rest of my life in a loveless, violent, manipulative relationship, and was basically alone in caring for a challenging child at the age of twenty, while also trying to remember who I was and get a degree that would allow me to provide for our family, and while most of my peers were out drinking from kegs at keg parties or something along those lines, I don’t really know. 

So that wasn’t really the short of it: the short of it is that for all these reasons and so many more, that fight sticks in my brain and won’t get out.  I am bless-cursed with a sporadically perfect eidetic memory for auditory stimuli.  When something I hear makes an impression on me, because it’s such a horrible dry grating noise or because it was screamed in my face, for instance, or because it accompanied really vivid emotions, I will later not just remember that noise but hear it in my head over and over every time I think about it, with the same reaction that I had when it first happened.  So I can close my eyes and hear it all now:  the things we screamed, the click click click click click click click click click click.  And it hurts, because I realize that I still feel pity and contempt and grief for the very young woman I was, and that even though I cope much better now with the kind of feelings those sounds elicit, they can still fill my brain and ruin my week.

Why am I thinking about all this at 3:40 in the morning?  Because I can’t sleep, and I just set the alarm to make sure I’m up to get my son ready for school at 6:30.  Click click click click click click click click click click click click click click click click click.  And it all comes back to me now, as Celine Dion predicted.  And if it were just the alarm clock, maybe it wouldn’t be so bad.  I could buy a wind up alarm clock, or set an alarm on my phone or computer. 

But why bother, because it’s not just that, it’s so many small things around the house, around this town, around my head that would need to be locked away in a safe marked “TRIGGER WARNING.”  I have a new bed, I’ve rearranged the living room, but even in my own apartment there are times and places when it hits me like a tidal wave of bricks, the memories, the feelings. 

We’re taught these days to believe that we control who and what we are.  But the truth is, we can’t help some of the things done to us.  They are real, and they affect our brains as much as falling out of an airplane affects a body.  You can’t wish it away.  Like it or not, better or worse, whether you think it will or not, when you bring someone close to you, it changes you.  You can become happy again.  I know people do.  But no matter how long it’s been, you can’t go back.

A manifesto of anger

An open letter to everyone who’s ever complained to me about lazy people living off benefits.

Dear Fucks Folks,

You come from a variety of walks of life.  Some of you collect six-figure salaries; others have only just come off disability benefits yourselves.  You might be a religious conservative or an idealist.  What you all have in common is an expressed contempt for the character of people who depend on public disability income.

“I won’t move into a building full of disabled people and crack whores.”

“It’s not like they’re blind.”

“They think they’re too good to work like the rest of us.”

“We’re just keeping them from getting better.”

At the root of all these comments, more or less enlightened at face value, is a fundamental confusion between inability and unwillingness.  It’s not as fine or blurry a line as you seem to think, gifted as you evidently are– and I say that straight-faced– with both ability and the inclination to use it to some end.

A good clue to the difference is the simple fact that the maximum benefit currently available for an individual on SSI– the benefit designed for those with low resources who haven’t accumulated a significant number of work quarters; i.e., most people with chronic disabilities– is $721 monthly.  Simple arithmetic says that’s less than $9000 annually.  By comparison, the federal poverty guideline for a single person is $11,490, which translates to about a hundred dollars more per month.  Disability income is also more than 1/3 less than the earnings of a full-time minimum-wage employee.

According to a popular rule of thumb that says 30% of net income should pay for housing, someone living exclusively on disability should pay rent (I’ll disregard homeownership out of hand as totally unachievable and untenable for the vast majority of people with disabilities) of below $250 monthly.

I live in one of the cheapest areas of the country, in the cheapest 2-bedroom apartment I can find.  For this, I pay $540 monthly, and the rent goes up on average about $60 every June, while cost of living adjustments to minimum wage and benefits go up by cents on the dollar.  Add in my basic utilities– while I don’t run the heat until the apartment drops below 55F– and my shelter expenses come to more than the SSI benefit, despite being only 75% of the national average.  An acquaintance who moved from Northern California in the late oughts reports finding studio apartments for no less than $1200 per month, plus a deposit twice that; he gave up his job and friends to come to the Midwest because he simply couldn’t afford to live, and was of necessity dug into a ten thousand dollar hole with payday loan companies.

These shelter expenses are exacerbated by having special needs.  People with mobility difficulties are often limited to available housing that offers first-floor access and 36″ doorways.  When most of the cheaper options existing in buildings 40 or more years old, with multiple stories and no elevators; with a landlord’s market ensuring that there is competition for every available space; with new construction being, obviously, targeted to those of means– this isn’t easy to procure.  In my case, my disability of social phobia and autism, even when I was single and childless, kept me from sharing lodgings with roommates, which could have radically reduced my expenses.

Add to this, further, the fact that low income and absence of a good credit record all but preclude being accepted for a lease:  if I didn’t have a family member to whom to turn as a co-signer, I’d be basically fucked.  And it’s difficult to establish a good credit rating when, as for me, your mental health makes credit cards a toxic concept, and you’ve left an abusive relationship while relinquishing any equity in property you had because you had no income to keep up payments.

After basic expenses, I can’t afford a reliable vehicle of my own, so I pay toward the expenses of a car I share with family in order to transport my son to and from school and his father’s house, gaining no equity: basically flushing what little money I have down the toilet with no possibility of recouping a dime.  It’s the equivalent of buying $10 boots every year instead of $50 boots every ten years.  Less money = less money.

Who among you would trade a disabled person a “lazy” well-below-poverty lifestyle for the security of your job, even if your earnings are meager?

Which of you would take the stress of managing a household on $8500 per year instead of that of working?

How about the hopelessness of knowing that the best you will ever be able to do for yourself and your family is scrape by, without any prospect of more comfort and security for the rest of your life?  The oppressive, guilty knowledge that you will never pay your child’s way through college, or own a home with a backyard for them to play in, or take them on vacation, or set aside savings for emergencies?

And the suffering of people with disabilities is hardly limited to numbers and economy.  I’m sure to many who can work, the prospect of a sedentary life, apparently without structure or monetary responsibility, sounds decadent and enviable.  You’d never miss a TV episode or a chance to drink a beer; you could finally spend time with your family, and, for some of you, catch up on that reading you’ve been meaning to do.

I don’t even deny sharing these sentiments during the few months at a time that I once struggled to maintain paid employment.  The grass is often greener, and I will never dismiss the fact that low-wage work is exhausting, unfulfilling, direly undercompensated, and oppressive in its own right.  That’s why I respect wage earners as much as I do: because I understand exactly how difficult and miserable that life can be.  My only quarrel is with the employed who view those less able as personally and morally inferior.

Let me inform you now that however it looks from the other side of this cloudy glass between us, life as a person with a disability is, frankly, hell.  You could pay me a middle-class income and it wouldn’t make up for the fact that I will never have the social and personal opportunities you enjoy.  I don’t have the privilege of spending my days locked at home alone watching the dishes pile up and the laundry scatter on the floor and the paperwork go undone until someone spills food on it.  I don’t have the luxury of being supported by the work of others.

No.  I’ll be fucked senseless if there is a day goes by that I think of my life in those terms.  My existence is one of constraint.  Of looking out the window watching people crowd toward their jobs and complain to one another and celebrate holidays and check their mail and take out their trash and pay taxes and repair their cars and go to the gym.  Of feeling involuntarily severed from the common suffering that holds society together, immersed in a solitary world where I am shamed every day by myself and others, incapable of pursuing the passions that compel me.

Staring blankly at the pages of books I meant to read for years.  Watching organic vegetables rot in the fridge while I lie on the couch without an appetite.  Watching episode after episode of inane Netflix titles– the same ones day after day, because I can’t follow anything new– because I can’t bear a moment alone with my own mind.

Making promises to the man I love and not keeping them, day after day, and seeing the sadness in his eyes– the eyes of less than a five-fingered hand’s worth of people into which I can honestly look– when he walks in the door, and looking for excuses and finding none other than who and what I am and will always be.

Having to explain to my child’s eager, innocent face on a warm day in November that Mommy is too tired to take him to the park, and seeing the resignation in his eyes because he has heard it so many times; watching him wander off to his room to entertain himself, or drift neutrally into an hour of My Little Pony, while I pull the covers over my head and wish I could cry about nothing something and everything.

Envisioning myself in the lives that everyone always wanted for me, as academic, poet, entrepreneur, musician, and grinding them into shards that slice me to ribbons because they are nothing more than idle fantasies, before I chuck them, day after day, into the bin of things that are restricted to Other People.

Who among you wants to get a few hours of video games in exchange for that impotence and shame?  Which of you wants to face the scorn of the gas station cashier when she tells you your card is empty and you can’t buy a bag of chips?  Which of you wants to be struck down year after year while you long for a life of strength and hope; told again and again that you are not and will never be up to the standard of the norm, and are thus worth nothing?  Who among you would face your own spite?

So go ahead, call me lazy.  But you’re right:  I’m not the one here who’s blind.

Yours Truly,

headcheese

The disability dilemma

Identifying myself as disabled has been a big step forward for me.  I grew up comparing myself to my peers and feeling like my differences and difficulties were my own fault.  Particularly with regard to academics, after a time I began to feel that my high IQ was misleading, and that the frustrations I encountered trying to master some material meant that I was, after all, stupid.  This has been a particularly painful supposition for me because at the same time, I have tended to value intelligence as the only plausibly admirable feature of myself, a saving grace that could compensate for being irritating, awkward, unattractive and useless.

During my brief stint in a public junior high, I got grades that were not bad, but basically mediocre; not up to the expectations of my teachers or myself.  Verbal directions in class baffled me, so that I consistently failed to complete assignments or totally misconstrued what the teachers wanted.  I lost my textbooks, and dropped my binders in the hall, losing the work that I had done.  Despite being a hyperlexic who learned to read at age 3 and devoured books ever after, my reading comprehension was lacking.  Meanwhile, I was being teased by my classmates for everything from my laugh to the way I walked to my facial expressions, not to mention my social befuddlement.  In a sense, my IQ was a curse, because no one ever thought to test me for learning disabilities or even talk to me about my problems; they just became irritated with me for “not living up to my potential,” and the anxiety provoked by their unconcealed disdain made it all the more difficult to concentrate and succeed.  I became so bewildered and frustrated that I began to suffer for the first time from morbid clinical depression, and started to consistently engage in self-harm to release the unbearable tension that built up within me.  Eventually, when the bus pulled up to the house one morning, I simply melted down, hid, and flat out refused to go to school.  I never went back.

By the time I started college, I had gained some ability to follow what was going on around me and complete the required work– aided substantially by textual syllabi and assignment sheets– so I was able to get very good grades.  Still, I was peddling uphill in many areas.  I spoke out in class too much and was laughed at by other students and frowned at by instructors for making comments that seemed argumentative, pretentious, pedantic, or otherwise inappropriate.  I had no study skills.  I would take notes almost word-for-word on lectures, and to prepare for a test I would repeatedly copy out this entire body of notes– sometimes over 100 pages for a single class– until the exact words were drilled into my brain.  Obviously, this process consumed prodigious amounts of time; luckily as a teenager without a social life I had few other obligations and could afford to spend whole days on studying.  My reading speed and comprehension was still suffering.  When, as a sophomore, I took a senior-level history class in which several nonfiction books were assigned, I would read a page and then forget what I had just read, so that by the time I got to class discussion or writing a response, my mind was totally blank.  I ended up dropping the class because I didn’t feel like I could ever keep up with the reading, and since I was busy blaming myself I didn’t know how to ask for help.  My shame and anger at myself for not managing work that seemed so manageable for other students contributed to my decision to drop out soon after, and that, in turn, helped to confirm that the one attribute in which I took any pride was a false front concealing a mind of no worth at all.

Now, returning to school almost a decade later, I have the advantage of diagnoses that have permitted and encouraged me to seek accommodations in my classes.  Extended time for tests allows for my slower executive function and compulsion to complete only perfect work, and for periodic breaks to re-center my attention.  A private, silent space avoids my discomfort with the overwhelming sensory stimuli and social anxiety intrinsic to a room full of students.  Note-takers in lecture classes make sure that if I am absent due to mood swings or lose concentration, I won’t miss vital information.  My disability status has also given me a sanctioned cognitive arena in which to speak to my professors about additional flexibility I may require on a case-by-case basis.  Although I have also made progress of my own initiative– for example, working to improve my study skills and time management so that I can learn effectively in the much more limited time now available to me– I feel very strongly that without these external accommodations I would not be able to succeed at a reputable university to the extent that I have.

However, my insecurities about my learning and intellectual abilities still jump out and bare their nasty grin more often than I’d like to admit.  I hold myself to unrealistic standards that, more often than not, serve to cripple rather than motivate my performance.  And I am ridiculously touchy about any comments that seem to imply I’m stupid or incompetent.  Sometimes these are blatantly rude interactions, such as when a fellow student recently snapped “Shut up!” while I was talking in class.  However, rather than be offended at his lack of social intelligence and stand up for myself, I took the incident deeply to heart and have been using it repeatedly to remind myself that I am incapable of behaving “normally” in class and making legitimately intelligent contributions.  At other times, I freak out over basically innocent comments, as when a professor who’s overall a first-rate person and instructor sarcastically remarks on “pretentious” pronunciations that I happen to share.  Rather than brush it off as not a personal attack, I again interpret and internalize it as a judgment about myself:  “See?  My bookish spelling pronunciations and efforts to correct my odd tone and diction make me look like a prat trying to be clever and failing miserably.  In fact, I am failing to be smart, and this is proof.”  The disability label, instead of a functional construct, thus becomes, to my mind, a facile and self-indulgent euphemism for incompetence and failure.

The flip side of this flip side, though– making this a trilemma perhaps?– is that at times, I secretly and guiltily wish that I was just a little bit more disabled.  I resent the fact that I had to reach my mid-twenties and discover my problems through trial and error and error and error and happenstance and research, because no one earlier in my life recognized my struggle as abnormal and sought to help me in any way, because I was left to stumble through the world confused and alone and self-loathing, with no comprehension of why I had to feel this way. I was classified as “gifted,” with all of the idiosyncrasies that is assumed to encompass, and the matter was left at that, with no realization that I was more than idiosyncratic; I was living in a different world, and I was miserable.  Had I not been labeled so early as precocious and gifted/talented; had my disabilities manifested themselves in more marked ways; had I failed worse and been less capable of barely floundering through; had I been a problem child instead of a quiet imaginative one; had I been years behind instead of ahead in my verbal abilities– might I have been noticed and helped from the start?  Might I even now receive more sympathy and be more legitimized, if I appeared pathetic and hence inherently courageous rather than just slightly “off,” abrasive, awkward, and a little slow on the uptake?  Might I feel better about myself if I was absolutely sure I had a problem to work with and not just an issue to get over?

These are the perceptions surrounding the disability identification for me.  I am very curious to know whether anyone else has had similar experiences and sentiments.  Even more than usual, I encourage everyone to contribute their perspective and open a dialogue about what the term disability means to you and how you employ it in your thought processes and daily life.  headcheese out.