Fear of flying

Over time, I’ve learned some of what triggers my hypomanic (and, more recently, full-blown manic) episodes.  I always seem to swing upward in the fall when the daylight starts to change, which is not something I can control, though I do try to modulate it with enforced darkness at night and a sunlamp the rest of the time.  There are other factors that I can somewhat control:  getting enough sleep and food is important, and being active, but not too active.

The problem is that managing my mood swings starts to feel like a full-time job and leaves me with not much time and energy for anything else.  First of all, what does “too active” really mean?  Last night I went to a political meetup for the presidential candidate I favor, and afterward I went to play Magic: The Gathering at someone else’s house.  I really enjoyed both, and when I got home, I felt buoyant energy coursing through me, so that I found it impossible to sleep until about 1 AM, despite taking my sleeping meds several hours earlier.  Then I had to get up early to go to a psychiatry appointment, so I ended up getting 5 or 6 hours of sleep.

Doesn’t sound like that big a deal, does it?  A couple of positive social situations and a couple of missed hours of sleep?  But it is a big deal, because all day, even though I’ve been physically exhausted, I’ve felt more and more manic.  I can’t fully express how frustrating it is that the simple act of enjoying myself and interacting with others for a few hours, or staying up late one night, can cause me to ascend into a manic state.  This state may only turn out to be a couple of weeks of giddiness and productivity, but then again, it might elevate into psychosis and put me in very real danger, as well as tax the patience of the people who have to deal with me daily.

Now, thanks to my mood, I’m in a strange state of waking without being fully present, and even though it’s past my bedtime, I’m incapable of rest.  When I try to lie down and sleep, thoughts swarm so thickly through my mind, like a plague of locusts, that I cannot stand it and must get up to distract myself– by writing this post, as it turns out.  I feel simultaneously irritable and expansive.  I want to see and feel and do everything at once, and yet I loathe everything.  Even though it’s an hour past my bedtime, I’ve opted to drink some coffee and stay awake, because the jittery energy with which caffeine endows me is preferable to being so exhausted yet agitated at the same time.

I deeply resent the fact that there are such potentially serious repercussions to this decision.  I feel like getting out of the apartment to participate in things I seriously care about and enjoy is beyond my healthy capacity.  Too much stress and stimulation.  I start to question whether I can ever have a full, satisfying life, if such minor changes to my routine can cause such a disturbance in my mood.

From there, I start to devolve into self-blame and self-loathing.  I feel that I should be able to do these things, partly because they make me happy, but also because others are able to do them so easily.  I want to contribute to society.  I want to have fun.  I want to be happy.  But my illness repeatedly robs me of achieving these simple goals.  I can’t seem to stay happy without getting too happy.  I have always in my mind the facts that I must not become psychotically manic and that a part of me still hungers for the terrible beauty that mania brings, as well as a heartwrenching resignation to the alternative of being at least moderately depressed all the time.

My euthymia (“normal” mood) is fleeting and fragile.  In the sixteen years since I first became clinically depressed, it never seems to have lasted more than a month, or perhaps six weeks.  That has happened few enough times that I can remember each discretely and count them on one hand.  Add to that a couple of weeks of (hypo)mania each year, and color in the remainder with the cold, black thrall of major depression.

So to me, my (hypo)manic breaks have always been just that: a vacation from what feels like the mundane reality of exhaustion, physical pain, tunnel vision, panic attacks, vomiting, uncontrollable crying, nearly unbearable sadness, hallucinations, fixations on death, drinking binges, and the overall feeling that a thick woolen blanket is wrapped around me, keeping me from feeling or desiring a single thing except to disappear.  I’ve grown accustomed to looking forward to the weeks when I write 200 pages or crochet five projects or exercise 3 hours per day.

Since my psychotic break, I can’t have that pleasurable anticipation anymore.  Every time I feel happy or have a positive thought, I have to check in with myself:  Am I talking too fast for others to understand me?  Am I fixating on something, especially something goal-oriented?  Am I leaping around the apartment laughing uproariously?  Does everything burn too much brighter; feel too ecstatic?  It is exhausting, and it deprives me of much of the non-mood-induced enjoyment I might otherwise experience.

In addition to my policing of myself, I must also deal with the worries of my family and best friend.  They often perceive my mania before I’m willing to admit it even to myself, and from my point of view, they hound me to sleep and eat and relax until I can’t bear the sound of their voices.  I want so desperately to scream at them to leave me the hell alone and stop babysitting me, but most of the time I remain aware that what they are saying contains truth, and that I really ought to listen.

It’s not easy to admit that you can’t trust what your own brain is telling you, and that you must rely on others to tell you what is going on in your innermost self.  If I’m honest, sometimes I do things like stay up late just to show myself that I’m an adult who can do what I please.  Not a very adult reasoning, and I’m not unaware of the irony in that.  But I’ve always been the rebellious one, asking too many questions and trying when I can to circumvent authority.  Sometimes I really want to do things that are bad for me, and sometimes it’s because I know they’re bad.  I know for sure that this is an aspect of why I continually smoke tobacco despite repeated attempts to quit.

I can’t help wondering what kind of future I can have in store if the simplest additions of socializing and contributing to society push me into unhealthiness.  I feel acutely what Stephen Fry claims in The Secret Life of the Manic Depressive, that only 20% of bipolar people are ever able to function at the level they would without the disorder.  (Although I am skeptical about that definition; who knows, after all, who or what we would be without our illness?)

I wonder whether the extent of my life’s accomplishments lies in part-time parenting, writing blog posts, and crocheting stuffed animals.  And that prospect feels hollow and despairing.  I wonder, too, what I would do should, heavens forbid, anything happen to my son.  The only reaction I can begin to imagine is to kill myself, because without him, I really have nothing to live for.

I need more from life.  I need to be able to fill my cup without it overflowing, and as of now, I evidently have not discovered how to strike that balance.  I know that for the foreseeable future I must continue to treat monitoring and regulating my mood swings as my primary goal in life, however disheartening and painful that may be.  I must accept that there is and will be no unqualified happiness for me.  All of my sunshine will carry lengthy shadows.

I’d like to finish by sharing some lyrics from a song I wrote some years ago after a thoroughly unpleasant one-night stand, which I feel captures my problems aptly:

I read the apes stood tall and walked away from the trees

With heads held higher and a sudden desire for fig leaves and apple juice

Well, I was sculpted in an ice hotel,

Far from heaven and I’ve been through hell,

And the breath of life still melts me to my knees.

Like Icarus, I always seem to fly too close to the sun.  There is a burst of glory culminating in a disastrous melting of everything that upholds me.  I either burn hot and fast, or I lay cold and dry as ash.  There is rarely any in-between.  My vigilance must not rest.

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Ten things never to say to mentally ill people

One of the frustrating aspects of having a mental illness is dealing with stuff people say, even though they often mean well.  Here are just a few examples of things I suspect most mentally ill people are used to– and very tired of– hearing.

1) “But you seem so normal!”

Perhaps this is meant as a compliment, but honestly, it feels much more like an accusation– “you can’t really be sick.”  People with many forms of mental illness go through patterns of remission and relapse, so how you see us on any given day may be far from representative.  For example, I am currently euthymic (in a “normal” mood phase) but a month ago I was hearing voices from the heavens and believing I was a chosen conduit, and a week after that I was seeing rotting corpses hanging from my ceiling.  Not “normal”, right?  Also, many of us are great, sometimes to our own detriment, at putting on a happy, calm face around others, when we are being ripped apart inside.  And finally, sometimes this “normalcy” is the result of a treatment regimen that we have to work hard to settle on and stick to, which is not something “normal,” i.e. healthy-brained, people can really understand.  Don’t judge us by what you see; listen to what we have to say about our experience instead.

2) “Have you tried natural remedies?”

This is a tough one, because people who say this genuinely think they’re being helpful.  However, it’s important to remember that many psychiatric disorders are very difficult to medicate.  In the case of my illness, bipolar disorder, upwards of half of patients are classified as “treatment resistant.”  Many people spend years working with professionals to develop a successful treatment regimen of drugs and other therapies that are scientifically proven to work.  This can be a tenuous balancing act of avoiding side effects, toxicity and drug interactions.  In most cases, “natural” remedies are not only unproven but possibly unsafe, especially in combination with prescription drugs.  Keep in mind that whatever you have to suggest, we’ve probably heard of it before, and it can be deeply frustrating to be bombarded with well-meaning suggestions from people who are not experts in psychiatry.  Please, leave clinical treatment to the professionals.  If you want to be helpful, try instead asking what you can do to support the person.

3) “At least it’s not cancer!”

This is a deeply offensive and dismissive statement, even if it’s intended to make someone feel better.  Implying that psychiatric disorders are less serious or destructive than physical ones is not only unkind but flatly inaccurate.  Mental illness not only ruins but, all too frequently ends, people’s lives.  According to Stephen Fry’s outstanding documentary The Secret Life of the Manic Depressive, only 20% of people with bipolar ever become fully functional, while 50% will attempt suicide and nearly half of those will succeed.  Those are abysmal numbers for any illness.  Furthermore, we deal with many of the same difficulties that physically ill people do:  drug side effects, exhaustion, and physical pain, just to name a few.  Dismissing the severity of our problems makes us feel worse, not better.

4) “My ______ had that and here’s how they got better.”

I remember a specific conversation I had years ago in which a woman I barely knew told me in detail about her father’s undiagnosed mania and how he was able to “talk himself down” from it, and that therefore drugs and therapy aren’t really necessary, but actually inhibitive of self-help.  Another told me how fish oil had cured her brother’s depression; these are just a couple examples of the same basic conversation I feel like I’ve had a million times.  It’s problematic because no two mentally ill people, even those with the same diagnosis, are alike.  Our treatment needs to be based on scientific evidence obtained through clinical trials, not anecdotal evidence you’ve gathered from your limited frame of reference.  Assuming that our illness takes the same course as that of someone else you know (who may or may not have even had or needed the same diagnosis) keeps you from understanding what our experience really is and what we actually need.

5) “Everyone seems to have that nowadays!”

Short answer:  No.  They don’t.  You probably have that impression because of the way clinical diagnostic terms are bandied about inappropriately, for example, saying of someone emotional and moody “She’s so bipolar” or “borderline,” or of someone shy and awkward “He’s so Aspie.”  (Although autism is not actually a mental illness, this pertains.)  There are also many people who self-diagnose, to varying degrees of accuracy, often without understanding the reality of living with a severe disability.  While many disorders are more common than you might expect– in the case of bipolar, it affects about 1% of the population, so that if you have several hundred facebook friends, at least a few probably have it– they are not catch-all terms for every difficulty and behavior problem you perceive.

6) “Have you prayed/meditated/sought spiritual help about it?”

As an adamant, skeptical atheist, I particularly resent this one, but I would still resent it were I religious.  Frankly, my spiritual life, unless I choose to share it with you, is none of your damn business.  Carl Jung’s waxing on about the need for religion notwithstanding, there is absolutely no scientific evidence that prayer, meditation and other such practices can either treat or cure mental illness.  Some people may find comfort in spirituality, and that’s great, but it doesn’t take the place of medication and professional therapy, nor is it a necessary component of treatment.  My illness should never be a pretext for you to proselytize or cast moral judgment on me.

7) “Think about people worse off than you.  Lots of people would kill to be where you are.”

Again, this is deeply dismissive and hurtful.  It gives the impression that you clearly do not understand the depths of our pain and difficulty.  You are judging us by external factors like first-world citizenship, economic stability, and family support, which are all wonderful things but do not do away with or even necessarily diminish the anguish and dysfunction with which we live every day.  If you think my life is so great, I invite you to switch brains with me any day and see how you like it.  Hint:  You won’t.

8) “That’s a form of genius!”

Movies like The Aviator, about OCD sufferer Howard Hughes, and A Beautiful Mind, about schizophrenic John Nash, have contributed to this perception.  It’s true that people with many mental illnesses, such as bipolar and schizophrenia, can be highly creative, thinking in ways that a healthy brain rarely does.  However, such illnesses– and often the drugs that treat them– are equally likely to hold back mental function.  Some people with mental illness are very intelligent and creative.  So are some people with healthy brains.  And some are not.  Mental illness is, well, illness, nothing else.

9) “You’re really just an addict.”

Many, many people with mental illness, myself included, struggle with substance abuse as a form of self-medication.  And in many cases this does make matters worse.  However, it’s crucial to recognize that the substance abuse is a result, not a cause, of the underlying mental problem– a damaging coping mechanism to which we turn in absence of other effective treatment.  For more on this scientifically supported model of addiction, I highly recommend the book The Sober Truth, by Lance Dodes, and particularly chapter five, titled “So, What Does Work to Treat Addiction?”

10) “This famous person had/has that and was a great success, so you can be too!”

Recall again the numbers I stated above on the outcomes for people with bipolar disorder.  I am no expert on the numbers for any other disorder, but I do know that a few outstanding cases– again, like Howard Hughes and John Nash, and also like Stephen Fry, Richard Dreyfus and others– are far from representative.  There are a multitude of external and internal factors that determine whether someone with mental illness can create a fulfilling, successful life, and for many they are not advantageous.  Asserting this is no different from saying that because some people who drop out of school become rich and famous, anyone who drops out can be.  In some cases, such limitations prove not to be an obstacle to success, but in most, they do.  By positing illness as part and parcel of success rather than as a disability, you dismiss the pain and frustration most of us experience when we fail, so frequently, to measure up to the expectations of both society and ourselves.

In conclusion

It’s understandably hard not to feel like you’re walking on eggshells when talking to and about disabled people.  Everyone makes mistakes when trying sincerely to be helpful; that doesn’t make you a bad friend or human being.  However, a few simple things to keep in mind can reduce the chances of you saying insensitive, hurtful things like the ones I’ve listed.

Listen to us.  Don’t speak for us, and don’t assume.  You are not an expert on our experience, and your active listening and informed support is far more valuable than anything you could say.  Don’t dismiss us.  You don’t need to try to make us feel better about our situation; this feels patronizing, and furthermore, downplaying our suffering is insulting, not supportive.  And lastly, be ready to be corrected, and to apologize.  Don’t take umbrage if we say “that’s not accurate” or “that’s not helpful.”  We have the right to stick up for ourselves and to educate you about what you don’t understand.  In general, just let us guide the discussion.  Ask questions, pay attention to the answers, and don’t be full of yourself.  If you can do that, we will get along just fine.

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.

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.

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.