bipolar disorder

holding-hands

Crazy Like Us

My daughter is on the autism spectrum. She’s high functioning enough that you might not notice right away, but spend enough time with her and it’s hard to miss. The aversion to direct communication. The stumbling articulation. The repetition. The tantrums. It all adds up.

I have rapid-cycling bipolar disorder, compounded by severe generalized anxiety disorder and panic disorder. Most people who know me know this now, but for over a decade, I hid it under oscillating workaholic tendencies, party girl antics, and homebody inclinations. Even with medications and a treatment team and vigilant self-care, the struggle to stay balanced is a constant one. I’d been fighting for everyone else for years, and I’m only now learning how to set boundaries and stand up for myself.

Ava and I have different struggles, but in many ways, we are the same. We struggle to make eye contact under pressure. Our tempers are fast and hot. When things get overwhelming, we retreat to calm ourselves. But most importantly, we understand the world around us through stories.

When Ava was first diagnosed, one of the biggest hurdles we faced was her speech delay. Her mind was moving faster than her ability to communicate. It made it hard to understand how to best meet her needs, but as frustrated as we were, she was even more so. She would often end up distraught, only further obstructing her ability to get through to us.

But then we found a workaround. See, Ava’s memory was second to none when it came to her movies and TV shows. She might not have been able to put her thoughts into her own words, but she could recall scenes that conveyed what she was feeling and recite them verbatim. Over time, I realized that her rambling was not without purpose, and started paying closer attention. It got easier. Not easy, but easier.

When I was first diagnosed, I was frozen, terrified of the sound of my own voice. I felt like my mind couldn’t be trusted, like I was mourning the death of my former self. No one around me could really understand what I was going through, and I couldn’t find the words to explain it, which only made me feel more alone.

But then I retreated into fiction. I read voraciously, I binge watched television, I collected movie plot lines like a connoisseur of terrible cinema. I’d write awful poetry, pen trite short stories, begin novels that would never be completed. But it calmed me and inspired me. These fictional figures, whether they were from my mind or someone else’s, brought me back to my voice and cleared my mind. It got easier. Not easy, but easier.

Stories continue to play an important role in our lives. For Ava, it’s not just a manner of self-soothing, but a means of learning language, geography, science, history, math, and more. For me, it’s not just a form of self-care, but a way to explore the rapid fire ideas searing through my mind’s crossed wires and find organization in the chaos. Stories save us every day of the week, and twice on the bad days.

Not everyone understands our connection to stories. I can’t tell you how often I’m lectured as a result of my leniency with Ava when it comes to iPad and computer play. They’ll cite studies and experts who deride screen time for children without consideration for or knowledge of Ava’s history, ignoring the fact that autism manifests differently for everyone on the spectrum. And when I retreat into reading and writing with a fervor unmatched, the assumption is always that the screws have come loose. After all, exactly how productive or therapeutic can something as trivial as a blog actually be? God forbid I defend my parenting or self-care; then I’ve clearly lost my mind.

But the fact of the matter is that Ava and I are different. We will never be normal. We will always need to find our own way to navigate life. We have to travel our own path, critics be damned, but truth be told, the view ain’t bad from this road. Call us crazy if you like. I wouldn’t trade our crazy for the world.

And our story is only beginning.

Daughter consoling crying mother

We Need to Talk About How to Talk About Mental Illness

Let’s kick off this party by admitting one simple truth: we suck at this whole talking about mental illness thing.

It’s the dirty laundry your family doesn’t want to share. We don’t really learn about it school. Most of our understanding comes from movies and TV and books that cast it as a dangerous villain. We associate the term with “undersirables”: the homeless, the violent, the drains on the system. The fact that all of this is unsustainable will pop up in the social consciousness now and then, usually when someone hurts someone else (as long as the person doing the hurting is white – but that’s a topic for another day), before fading into the shadows once more. We like it there. It’s scary when it’s in our face.

The simple insight – and the one most repeated – is that we don’t talk about mental illness enough. But where do we begin? Even as someone who believes that effective communication is one of our most powerful tools in situations like this, bringing up the subject of mental illness makes me uncomfortable sometimes. Part of that stems from stigma, part of it from my struggles with my own diagnoses, and part of it from not knowing where to begin.

But perhaps it’s also because the hesitation starts with the labels: mental illness, mental disorders, mental health crises. I hate it. When the conversation starts, the language we use to frame the subject matter immediately conjures negative connotations. It continues as we try to draw parallels to make it all make sense to those on the outside.

It’s like diabetes, we say. A lifetime of management.

It’s just like any other idiopathic illness, we say. You don’t blame someone for genetically-derived cancer, right?

It’s like a disability, we say. We just have to figure out how to operate differently in the world.

But what does all of that really say? There is something wrong with us. We are sick. We are broken. We are crazy. We need to be fixed.  

Let’s Hope This Works

The truth is more complicated than we might like. In recent years, efforts to push conversations on the issue into the public spotlight have, arguably, succeeded. People are more willing to listen to our stories; there seems to be a greater desire to understand the universe of conditions that impact one in four people.

The problem is that each experience conveyed through those stories is distinctive, and may require different language and metaphors to establish an understanding of that narrative. While people may be more willing to hear those distinctive narratives, the missing link has become understanding that one narrative does not foster a full understanding. It’s a snapshot in a mosaic of lives lived under the shadow of a diagnosis.

This becomes more problematic when we recognize that diagnoses are not static. For most conditions we might group under the blanket term of “mental illness,” we don’t have an answer to what causes it. As a result, pinpointing the best way to describe an individual’s condition is achieved by looking for what label best correlates to a given group of symptoms. Should medication be indicated by the psychiatrist involved in a person’s treatment, the prescriptions are written to treat those symptoms; there is no precise grouping of chemicals that can be relied upon once a label is applied. Most of the time, there’s a bit of pharmaceutical roulette involved.

That means a lot of uncertainty for those who have been diagnosed. Some doctors may interpret a grouping of severe symptoms as evidence of an acute manic episode. Others may see it as the manifestation of bipolar disorder with psychotic features. Others may see a psychotic break. The label selected often depends on the psychiatrist in question, their history with the patient, and the intensity of the circumstances. In cases where there is no prior relationship with the psychiatrist, family members may find greater sway in the evaluation process.

Even medication selection can be tremendously varied. There are those who attribute that to pharmaceutical marketing efforts, and there’s probably some truth to that. There’s also the fact that experiences with pharmaceuticals in the past may color a psychiatrist’s opinion of a drug, and that can be a problem when people can have dramatically different reactions to the same drug and the same dose. And speaking of doses, some prefer a heavier dose; others will start at a very low dose and work their way up. The same person might get the same label from three different doctors and be prescribed the same drug at three different dosages.

There are those who give up on the biological approach to treatment altogether. They will swear by cognitive or dialectical behavioral therapy (recognizing, thinking about, and talking your way through distorted thought patterns, for the TL;DR version). They may find yoga and meditation an essential part of regulating their thoughts and emotions. They’ll even argue that the right diet and exercise regimens are all you need.

And then there are people who buck the idea that these conditions require treatment at all. Terms like “mental skillness” get thrown around. They believe that what we view as mental illnesses are simply variations in the way our brains work. They insist that most people diagnosed are simply misunderstood creatives and empaths. They circle around the word “neurodiversity” as a rallying point – but we’ll get back to that in a minute.

The fact of the matter is that none of these really work as a one size fits all framework. Even on an individual basis, one can find themselves stuck squarely in the middle of these perspectives.

What’s It Like to Be A Fixer-Upper?

With the caveat that this is ONE story, let’s use my case as an example. I’ve been diagnosed with rapid cycling bipolar disorder, generalized anxiety disorder, and panic disorder.

There’s a part of me who can totally identify with people who get angry about being told that their unique brains are a symptom of illness. They extol the tremendous creativity and productivity associated with hypomanic episodes. They point to other cultures that see schizophrenia as representative of spiritual enlightenment. They present long, star-studded lists of the people who have accomplished tremendous things in their lifetime, despite having minds that others would call sick. I can’t argue with any of that. I miss being able to see things with vivid clarity, rapidly drawing connections and processing available data and sensory inputs to get a solid understanding of a situation’s nuances.

It’s more than that, though. People assume these labels mean you’re somehow deficient. That they should worry about you being unbalanced, even when you’re not symptomatic and things are under control. When a relapse happens – and they often do in a world of shifting diagnoses and treatments – it’s interpreted as support for the persistent, misplaced concerns. You find yourself wanting to scream that you’re not sick; you’re just different.

At the same time, I cannot see the acute manic and depressive episodes I’ve had as good or healthy. The experiences I had during those time periods were not a function of social stigma or being misunderstood. They were painful and terrifying. I torched my life, burning bridges and hurting the people I care most about. That’s not “mental skillness.” That’s not a form of diversity I celebrate. It’s not something I want anyone else to fully understand, either, because that would require them feeling what I felt, and I wouldn’t wish that on my worst enemy.

Drugs have helped to regulate those experiences. But they’re not perfect. Episodes still happen, though most of the time they are less extreme and shorter in duration on the meds. And though I recognize their importance, I also lament how tired the drugs make me, and how slow I feel I’ve become.

CBT and DBT work; I know that. I’ve read the lit, I’ve talked to doctors and therapists, I’ve listened to the stories from people who had their lives changed by practicing those techniques. I use them when I can. Sometimes it can be effective in cutting off a panic attack at the knees or breaking distorted thought patterns before they spiral in the midst of an episode.

But I’m also a trained debater. It’s not like I can compartmentalize those spiraling voices in my head so they don’t have that training, too. Sometimes recognition of a distorted thought pattern and logical counterpoints get shouted out. CBT and DBT alone are not enough.

I’ve had panic attacks in yoga class, believe it or not. I still do yoga in an attempt to calm my mind and build my ability to focus, but it’s far from a panacea. Meditation helps sometimes, but isn’t a realistic consistent solution for a single mom who’s constantly on the run. I exercise to regulate my energy and mood levels, which makes a difference, but certainly doesn’t kill off the anxiety that plagues me most days. While I try to eat a balanced diet, the costs of some of the more “trendy” diets, lack of evidence to support the claims associated with them, and the picky taste buds of a six year old have sort of rendered that solution worthless.

That’s my experience. Not everyone requires medication. Not everyone will be helped by CBT and DBT. Not everyone will be able to keep things in check without drugs and therapy. For me, no one solution works; it’s a blend of all the worlds, and that blend varies depending on where I’m at in a given moment. For others, it’s a different blend. For some, one solution may be all they need.

Most people have no idea how complicated all this is; how confusing and scary it can be to navigate a world where your mind is cast as your enemy; how desperately we want to be able to function alongside people whose brains are “normal.” The only way things get better is if we talk about it, but we’ve got to find a way to talk about what’s been cast as mental illness that respects the vast spectrum represented.

That’s part of why I like the term neurodiversity so much.

Don’t Call Me “Ill”

Think about it for a beat. When we talk about diversity, it’s often because we’re encouraging understanding. We still recognize that said diversity can result in injustice and pain. It shouldn’t be that way, of course. That’s why we look to cultivate perspectives and solutions that address said injustice.

How do we get to those solutions, though? Consider the conversations we have about privilege. We encourage those in a position of privilege to, essentially, follow the advice of Stephen Covey when he said successful people look first to understand. We ask them to listen. If they don’t, we can’t possibly work together to dismantle said privilege.

The same principles make sense in the context of discussing what we’d previously labeled as mental illness. It’s more about mental diversity. Let’s break it down for further clarity.

The experience of a person of color, for instance, is inherently different from the experience of someone who presents as white; history, social structure, and residual bias combine to create interactions for people of color that a white person will simply never encounter. Similarly, the experience of someone who has received a diagnosis or displays symptoms associated with a diagnosis is distinctly different from someone who does not. Someone who presents as neurologically typical can’t understand what it’s like for their brain to short-circuit, or to have their credibility and agency tainted by perceived weakness. Just as we have to listen to the narratives of those with different experiences to understand privilege in the context of race, gender, socioeconomic status, faith, and more, the only way conversations about mental health are going to be productive is if we are willing to explore the tapestry of narratives that color the spectrum.

Just as it is in discussions about privilege, it’s important to recognize experiences we may not immediately associate with that spectrum, too. Presenting as a member of a minority group illicits one experience; presenting as a member of a different group creates a different one.

Consider how that idea functions when it comes to race. The idea of being “black enough” has been present for years, ostracizing those whose pigmentation isn’t associated with being a person of color. Recently, black actress Rashida Jones, as an example, was told on the red carpet that she looked “tropical”… to which she responded, “I’m ETHNIC.”

There are some who benefit from the lack of apparent association, too. Take, for example, actress Maya Rudolph. She’s owned the ambiguity (professionally, I am not going to presume to know personal perspective), with roles as diverse as Beyonce on SNL and a woman who largely presents as white in Bridesmaids. It’s not a reflection of her identity or self-definition; it is a function of her experiences, and the way people experience her.

These dynamics introduce a whole new layer of complexity to critical conversations about racial diversity and injustice. That type of complexity is also important when we talk about diversity in how the mind functions.

There are absolutely people who experience hypomania, for example, without the negative repercussions associated with a bipolar diagnosis, and their experience (and approach to how they process those experiences) are distinct from someone who has recurrent acute manic episodes. The former may never present as being “mentally ill.” They, like Rashida, may become frustrated by ignorance. Like Maya, they may find rewards in their socially ambiguous status, taking advantage of elevated mood and energy in pursuit of greatness. The latter may yearn for the experience of the former, exhausted by their own intense symptoms. To some end, there may be comfort in their more obvious symptoms, as it can garner more sympathy and understanding (though certainly not always). But broadly speaking, the tension that surfaces between those with diagnoses is real.

All of these experiences matter in the conversation about neurodiversity and mental health, just as diverse experiences matter in conversations about privilege with minority groups. There are intersections and levels of impact and they deserve consideration.

Just as an illustration of how those experiences can be distinctive, I know mental illness certainly wasn’t the conclusion drawn by the people in my life when I was experiencing hypomania. I can’t even count the times I’ve been told that I’m more valuable at partial capacity than most people are at full capacity. It feels good to get compliments like that; it’s also lonely and frustrating because there’s more going on than meets the eye and no one gets it. As things progressed and hypomania transformed into acute mania… well, let’s just say the experience was less complimentary. I wish I could go back to when things were simpler most days. The fact that I am not only diagnosed with bipolar disorder but generalized anxiety disorder and panic disorder as well can make both of those stories difficult to communicate to those who only experience bipolar disorder, either as an individual or someone who has encountered someone with the diagnosis. It’s not black and white or even grey; it’s a kaleidoscope of rebellious neurons who don’t care about your need for clarity.

And just as conversations about diversity in general require recognition of the way difference is processed as the problem – and not the diversity itself – conversations about neurodiversity should stop characterizing its presence as problematic, and start focusing on how it’s approached.

When we talk about how race or gender influences experiences in the justice system, workforce, and social interactions, we don’t say that the problem is being black or a woman. We say that the way we treat people because they belong to these groups is a problem. So why, when we talk about neurodiversity, do we say that the brain is the problem? Can we not say that the brains of those with diagnoses are distinct, and create different experiences? Can we not say that some of those experiences are positive, while some are not? Can we accept those positive experiences without diminishing them, and seek solutions to the negative ones? Can we seek those solutions without further stigmatizing those who have had those experiences by stripping them of agency?

If it’s possible to adopt that framework when discussing diversity in general, can’t we do the same when it comes to diversity in the way our minds work?

We Can Do Better

Listen, I’m not trying to tell anyone with a diagnosis how they should process or approach it. I’m not a doctor or therapist or expert, and I can’t know the distinctive experiences that dictate solid advice in that arena. But I feel pretty confident when I say that anyone who knows what it’s like to do the mental illness discourse tango will tell you that we can do a lot better as a society in our conversations about unique brains.

I’m fully aware that the discussion that’s taken place here isn’t exactly a detailed road map. I’m not sure it would be possible to draw one. So I’m going to ask you a favor. It doesn’t matter if you have a diagnosis or not. Just try.

Listen.

Listen to the stories of people who think like you. Listen to the stories of people who do not. Listen to their differences. Listen to the stories of pain. Listen to the stories of triumph. Listen without the comfort in believing you know how the story ends.

See.

See people. See human beings, not labels. See experiences, not symptoms. See hope. See despair. See the fight it takes to see through the fog and be seen.

Learn.

Learn about your family’s mental health history, and what your risk factors are (there are probably several, but most won’t talk about them without prompting). Learn what the diagnoses applied to the people you care about mean from them (and those folks are there, even if you don’t realize it). Learn how to ask questions without thinking you already know the answers (you can’t). Learn to support those fighting the good fight instead of assuming you know what’s best for them (you don’t).

Speak.

Speak out when labels associated with neurodiversity are traded as barbs. Speak up when someone conflates those labels with character. Speak about persnickety neuroelasticity and finicky neurochemical levels and atypical neural lobe activity as a function of diversity instead of deficiency.

Remember.

Remember that you’re never going to stop learning about this if you’re doing it right. Remember that even if you do share some of my labels, my experience with them is unique. Remember that I face challenges you probably won’t, and have to make decisions you’ll probably never have to wrestle.

!!! BUT !!!

Even if your experience isn’t mine, it’s still unique. You face your own challenges. You make your own decisions. It’s hard. It’s life. And we’re all just doing the best we can.

Maybe we’re not that different, after all?

I am not sick or broken or in need of fixing. Just different. I’m neurodiverse. I’m me. My diagnosis does not define me or my character. It does not determine my self-worth or agency. And it feels amazing to finally say that and mean it. It’s actually one of my feelings that I do want other people to experience – all of you, diagnosis or no. And I’m hoping that if we can listen and see and speak and remember that more of us might get that chance.

Frankly, it’s been this journey through what we call crazy that’s gotten me to this point. Maybe I am mad, but I can’t help thinking that Plato got it right in Phaedrus when he said:

[I]n reality the greatest blessings come by way of madness, indeed of madness that is heaven sent.

Is that really so crazy?

brain_on_fire

Wandering Aflame

I’ve always been a storyteller in one way or another. For a while, it was art, with my Grandma crooning advice and comfort while I clumsily wove colors into ideas. For a spell, it was poetry, with disjointed words giving life to the jumble inside. At one point, it was performance, with the stage giving me and the characters that counted the life needed to tell a tale. But in the end, language was my greatest love. My hard drive is littered with half-finished manuscripts. A dozen blogs later, and I still can’t resist the call of the keyboard.

A friend recently asked me why I feel compelled to write. The answer came quickly, without much thought required:

“Because some stories need to be told.”

Does this story really need to be told? I’m not entirely sure, but I feel like I need to tell it. For too long now, I’ve let its fractals swirl in my mind. I wasn’t really sure where to start – the pieces a turbulent ocean of choices – words, syntax, plot twists and more eliciting choked laughter in the face of absurdity. The really important stories are like that, you know. If you’re not careful, the mixings rise up in a painfully beautiful wave of possibility before crashing down and drowning you in a dizzying riptide detached from reality.

Eventually (if you’re lucky), you find yourself smashed against the rocks. Bruised and broken, pain searing deeper than a body can explain, there is grief and gratitude as the deceptively gentle foam from the storm ebbs. For the past month or so, I’ve rested on such rocks – healing, reflecting – but before the wounds fade to scars and the pain becomes an addled memory, I feel compelled to write this down. It’s selfish in some ways, but it’s not just about me. I’m not the first to weather this particular kind of storm, and I won’t be the last. So yes, maybe this story does need to be told.

In any case, I’m going to tell it as best I can.

What They Saw

I was always THAT girl. In second grade, I launched a “Stop the Violence” campaign at my elementary school after my teacher described the negative impact of violent television on a child’s development. Posters, essays, and even an ill-fated rap song were created for the initiative. In fifth grade, I successfully rallied the student body to get a stop sign put in on a busy corner by the school where several accidents had taken place. Proudly brandishing the petition I’d been passing for weeks, I stood defiant in the face of my scowling Principal. He thought I was making him look foolish. I didn’t care; I won.

In middle school, I was the student who told her teachers to either stop wasting my time with juvenile activities or go back to school themselves. I gravitated towards and excelled in the performing arts. I was fearless. The opinion of others was of little consequence, as far as I was concerned.

In high school, I was involved in everything. National Honor Society, French Honor Society, Choir, Theater, Speech Team, Yearbook, Student Council, the Newspaper – I kept busy, to say the least. I was always hungry, always searching, always reaching. My activist ways hadn’t disappeared. Once again, I pitted myself against the school when they tried to change our finals schedule to something less like collegiate final exams. Once again, I left my Principal frustrated and fuming. Once again, I got my way. It’s amazing what happens when you threaten to go to the school board with a lengthy petition and research to back your case.

In college, my ambitious nature and passion for advocacy was bolstered by Speech and Debate. I was one of the oddities of the forensics community: someone who racked up achievements in all categories of competition. From interpretive performance to public address to limited preparation speaking to debate – I collected accolades across the board. I used the activity to speak on subjects that mattered to me and to refine my communication skills. By the time I was done in 2009, I’d had quite an impressive run of things.

My daughter was born just before my senior year of college. Her father and I had been together for years, but we weren’t good for each other. It was one of those romances that brought out the worst in each of us. He – a normally congenial, compassionate individual – became callous and derisive. I – someone who others regarded as strong and resilient – became a simpering shadow of myself. I called off our engagement towards the end of my senior year, and while the months that followed were difficult, both of us to this day will say it was the right decision.

And so I transformed into the embodiment of the strong single mother. I eventually moved back to Chicago and landed a fantastic job with a niche investment firm. Despite having no background in finance, I managed to deliver tremendous results for the company in a very short time period. Industry peers were often flabbergasted when they met the author of our research in person; they never expected a bubbly, 24 year old blonde to be churning out the analysis our brand boasted. When crisis hit the industry, I kicked things into high gear, steering the company through the chaos, framing our leadership as champions of the investor base, successfully running a campaign to get our CEO elected to the regulatory agency’s board of directors, and pushing the agency’s President to tender a letter of resignation.

I left that job to pursue consulting work. I continued to blog on subject matter that held importance for me. I worked with a wide array of companies, and was lauded at every turn for my brilliance, capacity for production, and dedication to excellence. Friends and family frequently commented on how much I inspired and impressed them. I clearly had it all together.

I’m not telling you this out of ego. I’m telling you this so you understand the contrast between what the view was from the outside looking in, and what was really happening.

Because inside, my mind was burning.

The Fire Within

I had my first panic attack in sixth grade. My family was vacationing at my grandparent’s lake house, and I really wanted to call my “boyfriend” at the time. I knew it was against the rules, but I did it anyway, and got caught. Grounding was a sure bet when I got home, but I was more angry with myself than anyone else was. How could I be so careless? How could I be so thoughtless? As I spiraled in self-constructed shame in the night, I tore at the flesh on the back of my hand, peeling back layers of skin. In the moment, I wasn’t really thinking about what I was doing. I just knew, deeply and profoundly, that I was deserving of punishment.

The panic attacks continued throughout middle school and high school. I would hide when they hit. They were terrifying experiences. I scared myself, sure I was losing my mind. I coped by punishing myself for being so broken. Safety pins, scissors, pieces of glass all found their way into my arms and thighs. It was never about wanting to kill myself; it was simply about accepting what I viewed as much deserved consequences.

In college, speech and debate provided a new coping mechanism. I could throw myself entirely into the work involved, hedging against the panic that had plagued me in the years before. The nature of the team meant self-injury was no longer an option, anyway. While I’d been able to hide my stealthily stolen cuts with the business of extracurriculars before, it would have been too difficult to pull off when I spent 24 hours a day, 4 days out of the week, with the same group of people. Someone would have noticed the blood stains on my shirts, the shining new scars popping up each week.

I still had panic attacks, of course. At tournaments, errors in round would send me scrambling for a stall in a bathroom where I would bite down hard on a pen and silently sob, willing my mind and my body to relax so I could continue with the day. When I wasn’t at tournaments, I would walk or drive until the attack passed, assuring those around me that I just needed some air or to be alone with my thoughts.

No one had any idea how bad things were.

When I called off the engagement, the nagging feeling that I’d been losing my mind became a truism in my head. I could feel myself losing control, which was a big part of the reason I moved home. Once more, I was scared of myself, except this time, I couldn’t lock myself in a closet and rock back and forth until the fear subsided. There was a little girl depending on me. I needed to pull it together.

The new job helped in much the same way that speech and debate had, but I soon found the panic attacks increasing in frequency and intensity. I wrote it off as depression, and made an appointment with a physician to try to get something prescribed. I didn’t have time to go to a psychiatrist, I rationalized. I just needed a quick fix. I felt like I was in a fog on the meds, though, so that didn’t last long.

In the meantime, I was losing myself in what had become a merciless cycle. There would be weeks where you couldn’t hold me down. I would be productive beyond measure, with boundless energy and grandiose visions of what would come next. Then there would be stretches where I could barely bring myself to get out of bed. The spells of clarity between the extremes were becoming shorter and shorter. The highs were higher and the lows were lower. Activities of daily living were optional. My house was in a state of constant disarray. When I was down, I’d go a week without showering. When I was up, I’d go days without sleeping. I put up walls that made the Chinese look like amateurs. Some use the adage of keeping people at arm’s length; I kept a football field between myself and everyone else, fracturing relationships and isolating myself from the world.

The only constant was the self-loathing. I hated myself for not being a better friend, sister, daughter, mother. I hated myself for not being better at my job. I hated myself for being such a mess. I hated myself for being so hopelessly, helplessly, broken. I saw myself as a disappointment and burden to those that mattered. No amount of reassurances to the contrary could change that.

And still, no one knew. Years of training in theater, speech, and debate meant I knew how to put on a helluva performance. I gravitated towards work that would mask the turbulence beneath the surface. Startup environments and consulting work were ideal. I could justify staying in bed for a week because I knew the next week I would be “back” and all would be forgiven. I kept everyone out of my apartment so they wouldn’t know how undone I’d become. I put all my energy into making sure my daughter was cared for; everything else was victim to my madness, and that was an acceptable tradeoff if it meant she was ok.

I didn’t think that meds would work for me, but I knew I had to regulate things to some extent, so self-medication became the name of the game. I couldn’t go a week without sleep, so I would force it with a couple bottles of wine or a half a bottle of Jack Daniels. I knew my family had a long history of alcoholism, though, so I would only allow it on occasion. Two nights of sleep a week were better than nothing, I told myself. I found other ways to hedge against the panic attacks, stealing into alleys to find the release necessary for maintaining a façade of composure among the normal people of the world, spritzing perfume on my way back to mask the smell.

It wasn’t healthy. It wasn’t sustainable. And over the past eight months, those tactics had been slowly losing their efficacy while I fell to pieces.

I had known for years that something was very wrong with me, but I was a coward. I didn’t want to be viewed as flawed or inadequate, even if that was how I saw myself. I didn’t want to risk someone taking my child. I was scared of what the diagnosis might be if I did seek help, and even more afraid of what the aftermath would look like. I told myself if I could just white knuckle my way through it, if I could just be a little bit stronger, it would all pass. I clung to those lies like a child to their security blanket.

But my mind was on fire. When I was down, the crevices of my brain were filled with glowing embers that slowly burned any sense of self-worth I had. When I was up, the flames were all consuming, my eyes white hot with deranged certainty. There was no putting it out. Even the steps I took to dampen the inferno were counter-productive, clouding my vision with smoke as pockets of the charred labyrinth within began to spontaneously combust once more.

I don’t remember much from the day before the lying stopped. It was at the tail end of my final two weeks on a job that had become a poor fit for reasons separate from the struggles within, but probably not helped by them. I remember going into work before anyone else had arrived. I remember the beginnings of a panic attack ten minutes before the rest of the team was scheduled to come in. Mostly, my memory of the events that followed are just flickers. From what I’ve been told of it all, I’m grateful for that. It was a full blown nervous breakdown, accelerated with alcohol and successive panic attacks. I was lucky to have coworkers who cared, and lucky to have made it home in one piece.

I woke up at 2 AM. I learned my mother had seen me stumble into the apartment complex, and decided (thankfully) to keep my little one for the night. Looking at my bruised and scraped legs, at the heavy bags that had grown under my eyes, and around my disaster of an apartment, I knew the jig was up. I begged a ride to my parents’ house and snuck into my daughter’s room, silently crying myself to sleep on the floor next to her bed. I’d left a note for my parents to find by the coffee maker.

“I’m sick. I need help. I can’t do this alone.”

Rapid Revelations

The following day, a plan was put in motion. I was to stay with my parents until we could figure out how to get me back to good. I did an intake assessment over the phone with a local mental health crisis center. They immediately scheduled an in-person assessment for the following day, at which point I entered into an outpatient mental health crisis program.

It was there I learned that, for at least ten years, I had been suffering undiagnosed with severe generalized anxiety disorder, panic disorder, and bipolar disorder.

The diagnosis was equal parts terrifying and liberating. On one hand, the very words sent a chill down my spine. On the other hand, so much of the ruins surrounding me began to make sense.

Like any good debater, my first instinct in facing what was undoubtedly a massive challenge was to research the hell out of it. A double edged sword, the activity that had taught me to mask my illness so well was saving my life in turn. Though I considered myself a fairly well-educated and informed individual, I quickly realized I knew next to nothing about my illness. Let me walk you through the cliff notes.

Bipolar Disorder is not a singular diagnosis; the illness manifests on a spectrum, with a wide bevy of variables determining where on the spectrum you might fall. Generally speaking, though, it is marked by periods of mania and depression.

Manic periods are the “highs.” Individuals who are manic often experience high levels of energy, a decreased need for sleep, and major productivity. Episodes with only characteristics like these are best described as periods of “hypomania,” and their appeal can make those suffering from Bipolar Disorder hesitant to get help; who would want to get rid of feel good periods of super human capability? But as your thoughts race more and more quickly, the control that would make hypomania desirable falls apart, and things can get scary fast.

You see, manic episodes can also include some less than desirable behaviors. Impulsive decision making and spending, reckless sexual choices, and delusions of grandeur (I’m sure this risky business venture will make me a millionaire despite no research or evidence to support my claim!) can quickly take over. At its peak, mania can include even more major delusions (I am a descendent of royalty!), paranoia (Because I am a descendent of royalty, people are out to get me!), and even hallucinations (Look! There are the assassins!).

(For the record: I never thought I was royalty. These are just extreme examples.)

Mania is the place where logic goes to die. Or more accurately, the place where logic loses its influence on the mind. There are times when you can recognize your behavior or decisions as irrational, risky, or perilous, but the voice of reason inside is shouted out by impulses stronger than anything you’ve ever experienced. It what makes those manic periods so dangerous.

And then there’s the other side of the coin – depressive cycles. Most people today are generally familiar with the idea of depression, as it’s one of the more socially acceptable mental health issues to discuss publicly. But it’s not just sadness. It’s apathy. It’s no energy. It’s a desire to sleep constantly. It’s this feeling that you have no purpose. When depressive cycles hit their lows, you become convinced that you’re a burden to those around you, that the world would be better off without you. You feel hopeless. You feel helpless. You feel worthless.

And then there are mixed states. These are downright terrifying. The impulsive behaviors and racing thoughts of mania combine with the shame spirals and feelings of worthlessness experienced in a depressive cycle, and you feel like you’re coming undone at the seams. These states can be the most dangerous of all.

There are so many other factors that impact how Bipolar Disorder manifests. It’s a very individual experience. Doctors, in an effort to treat this quicksand of an illness, use different buckets for a generalized understanding of the disorder. Bipolar I is considered the basic manifestation of Bipolar Disorder, with pronounced manic periods and deep, debilitating depressive cycles, episodes lasting for months, and longer time periods between the end of one cycle and the onset of a new cycle. Then there’s Bipolar II, with hypomania and long, pronounced depressive cycles. There’s cyclothymic disorder, where there’s frequent alteration between mild depression and mild hypomania, often mistaken for issues with an individual’s personality. There’s even “soft” Bipolar Disorders, sometimes referred to as Bipolar III, where symptoms are far more moderate.

And then there’s Rapid Cycling Bipolar Disorder, most easily denoted by four or more manic, depressive, hypomanic, or mixed states a year. Though I display most, if not all, of the symptoms of Bipolar I, the frequency of my intense episodes puts me in this category. It’s miserable. Incredibly miserable. It didn’t used to be this way, but in the year or so before my diagnosis, things were pretty awful. My cycles would last a few weeks, and then one day, it would be like someone had flipped a light switch, and I’d be sliding into a new cycle. It wasn’t something I could explain to anyone, either, making things much worse. Those who cared about me were left wondering why I had suddenly fallen off the face of the planet, or why I’d reappeared like someone had shot me up with adrenaline.

Understanding the illness made so much of my past make more sense to me. They say hindsight is 20/20, and the clarity that came with increased comprehension of my diagnosis and how the illness had progressed was truly horrifying. I could clearly identify periods where I had been manic, making wild relationship decisions, spending money I didn’t have, working to the point of exhaustion, so sure that the project in front of me was the most important thing in the world. I could see the depressive periods more starkly – those times when Ava had come into my room, pulling up the covers, assuring me that it was ok and that my heart would feel better soon.

There were a lot of tears during this period of revelations. It also kicked off a tour of apologies. I started reaching out to the people who cared about me and who I loved dearly to break the news of the diagnosis and express remorse for any pain or embarrassment I’d ever caused them. I’m lucky to have a lot of wonderful folks in my life; the response was overwhelmingly one of love and support. I would (and still do) need it. There was much work to be done.

Required Revolution

Treatment, particularly in the beginning, was a complex challenge for the professionals working with me. Ten years of masking my illness, even if I wasn’t fully aware of what I was doing, necessitated complete and total transparency with the program facilitators, my assigned therapist, my psychiatrist, and my parents. In other words, I needed my carefully maintained walls to be obliterated, leaving me exposed and vulnerable. To say that was difficult for me would be the understatement of the century, but I was acutely aware of its importance.

So I gave the variety of therapies the program was built upon my all. Expressive therapy through art smacked of my childhood, but it also provided an outlet for the jumble of emotions in my mind. I began journaling extensively. Sometimes the entries made sense. Sometimes they didn’t. They did, however, help settle me in times of high anxiety, and provided documentation of my cycles while we figured out the best treatment path. Despite intense skepticism, I embraced DBT, or Dialectical Behavior Therapy – an approach involving identifying and correcting distorted thought patterns. With the help of anti-anxiety medications, I participated openly in small group therapy sessions, laying my soul bare.

Eventually, though, the program was no longer a fit. That put me in a tough spot. While Bipolar Disorder is not something you recover from the way you might the flu, the trauma involved in confronting the diagnosis and the changes required do necessitate recovery, and I was still working through that. I wound up having to piece together a program of my own, much of which involved a complete overhaul of my lifestyle.

I made the decision early on to unplug. I pulled away from social media. I stopped watching the news. I cut myself off from blogging. Part of it was that I knew I needed to focus on me for a while. Part of it had to do with emotional health.

Despite having closed myself off from meaningful, balanced, consistent emotional connection for years, I had always been an exceedingly empathetic individual. I knew that until I had a grip on things, that empathy was dangerous to me. I could see, looking back, how my obsession with speaking out against injustice and engaging with readers of my writing had exacerbated my symptoms during manic and depressive cycles. As bits of news regarding the immigration crisis, ISIS, and Ferguson trickled in, I struggled to stay quiet, but I knew I couldn’t make an exception. It wouldn’t be healthy for me, and truthfully, I wouldn’t have been able to do the subject matter justice without a clear mind.

Gone were the days of pulling all-nighters, or even successive late nights. Regulating my sleep wasn’t just a good idea, but necessary for my medications to have their maximum effect and for my stress levels to be effectively managed. Exercise was no longer something I did when it was convenient; it was not a luxury, but crucial to maintaining a healthy balance in my energy levels. Even my diet had to change. Caffeine consumption was cut down to a fraction of what it had been, sugar intake was slashed dramatically, and proteins paired with whole grains and healthy fatty oils became the norm. Lucky for me, I love guacamole.

I continued expressive work on my own, picking up the paintbrush alongside my daughter for some bonding and therapy all at once. I started writing poetry again. I journaled voraciously. Anything to keep the emotions flowing in a productive manner instead of bottling up to the point of explosion. I went to two support groups regularly: one run by the Depression and Bipolar Support Alliance that met twice a month, and one run by the National Alliance on Mental Illness that met weekly.

I continued practicing radical transparency with my parents. Each morning, I would check in the way I had at the program: rating my anxiety, depression, and physical discomfort, relating whether there were any passive or active suicidal thoughts, describing where I was in a given cycle. If things began to shift rapidly – as they did on several occasions – I immediately told them what I was experiencing and what I planned to do to keep things in check. I took all medication in their presence.

And make no mistake, medication was an issue. Because every manifestation of Bipolar Disorder is unique to the individual, much of the process of determining the proper medicinal treatment equates to Pharmaceutical Roulette.

In the beginning, the top priority was getting my anxiety under control. At the time I entered the outpatient program, it was completely debilitating, with any level of interpersonal interaction a potential panic attack trigger. Lexipro and Buspar were prescribed for anxiety management, along with Clonazepam to counter panic attacks, a caffeine/codeine hybrid to counter the headaches everything else generated, and Trazodone to regulate my sleep.

My anxiety did lessen, but as I started to notice the beginnings of what I could finally recognize as a manic cycle, it became clear we needed something additional in the mix. Lexipro was out and Lamictal was introduced, but slowly, to make sure I wouldn’t be in a small subgroup that experienced a rare but lethal rash as a side effect. Like I didn’t have enough to worry about, right?

Unfortunately, the Lamictal wasn’t enough. It was begun at the onset of my first major manic episode without self-medication, and the peak of that episode was nearly catastrophic. I got to a point where even my go-to for self-care – fiction – was working against me. It was as though I absorbed the qualities of the characters involved in whatever I was watching or reading. While binging on the TV series Fargo, I became paranoid, fearing that someone was trying to build a case to take my daughter away, and was convinced that with diligent investigation, I might crack the case. I read The Curious Incident of the Dog in the Night-Time, a novel narrated by an autistic 15 year old boy, and suddenly found myself hypersensitive to auditory stimulus and obsessed with order. I knew none of it made sense. But the rational part of me was losing ground.

(Side note: Both the show and book are excellent and highly recommended otherwise.)

Things finally reached a boiling point. Overcome with the sensation that my mind was quite literally aflame and in the throes of the worst panic attack of my life, I ground my teeth so hard that I cracked off half of a tooth. A phantom cacophony of merciless and cruel thoughts about myself and my worth filled my ears. As my muscles contracted and my body contorted, I looked like I needed an exorcism while I wailed hopelessly against the night and my parents looked on helplessly. Had a heavy dose of the Clonazepam not cut through the attack, I’d have been admitted to the local psych ward for inpatient treatment. We were a mere two minutes away from getting in the car and driving to the ER.

Then came Saphris. Following the major attack, I scheduled an emergency meeting with my psychiatrist. While advising me to actually go to the hospital if things ever got that bad again, he prescribed Saphris, saying that it’s what he would have introduced had I been admitted that evening. An atypical antipsychotic drug, its rapid impact was nothing short of miraculous. Within two days of incorporating it into my pharmaceutical cocktail, I felt more stable and clear-minded than I had in years. It was something I thought I’d never experience again. Slowly, I needed the Clonazepam less and less. Slowly, my confidence returned. Slowly, I started feeling human again.

Flames Tamed

Today, I can honestly say I am healthier and happier than I can ever remember being. Not every day is easy, of course. I’m not sure if it’s best described as an abundance of caution or doubt instilled by the diagnosis or the result of years and years of stymied emotional expression, but I sometimes struggle to discern symptomatic behavior from the normal range of human responses. I know this is common. It doesn’t make it any easier, and it’s tension that isn’t likely to dissipate anytime soon.

The fact of the matter is that my illness is one that I will be managing for the rest of my life.

Much like a diabetic, I will always be on medication. While there is promise in genetic mapping for better treatment in the future, any type of real understanding of what causes the disorder – let alone some kind of “cure” – is decades away. And while my symptoms may go into remission, going off the medication, no matter how good I feel or how long it’s been since a major cycle hit, could set me up for a painful, extreme relapse.

Much like a diabetic, I will have to be careful about what I consume and how I consume it in life. Sugar’s only a part of the equation; I have to watch the thoughts I let dwell in my mind, the people I let into my world, and the work I bring onto my plate in order to effectively manage my health. This deliberate approach to the world is new to me, and far from intuitive, but it isn’t optional.

Much like a diabetic, I will have to be diligent about monitoring my levels. It’s not blood sugar I’m evaluating, of course. It’s about the efficacy of my medications, as they can fade over time. It’s about not isolating myself, and leveraging my support network to hedge against relapse. It’s about journaling consistently to keep records of my experiences, should my mind become unreliable again.

This is not going away. This is part of who I am now. Having Bipolar Disorder does not define me, but the roller coaster I’ve been on has certainly shaped me in ways I’m not sure I’ll ever be able to adequately articulate.

There’s no way to avoid the doubt that comes with learning you suffer from Bipolar Disorder. No amount of DBT has been able to quell fears that my diagnosis will cause someone to take my daughter from me, or that it will undermine my advocacy efforts. No amount of evidence to the contrary has quashed the concerns that medications might dampen my cognitive abilities or neuter my empathy.

It’s during times when those thoughts bubble to the surface that I remind myself that I’m in good company with my diagnosis. I’m talking Virginia Woolf, Ludwig van Beethoven, John Keats, Vivien Leigh, Patty Duke, Edgar Allan Poe, Catherine Zeta-Jones, Ben Stiller, Gaetano Donizetti, Robert Schumann, Vincent Van Gogh, Sting, Carrie Fisher, Winston Churchill, Tim Burton, and Tennessee Williams, just to name a few. The way I see it, if Isaac Newton could rise to become one of the most influential and celebrated scientists of all time while combating Bipolar Disorder, surely I can make my own way.

I know, though, that I am extremely lucky. I am lucky to have such supportive family and friends. I am lucky I had access to high quality medical care. I am lucky I got help when I did. Bipolar Disorder, untreated, is often fatal. The rate of suicide deaths among those suffering from Bipolar Disorder is 15 times higher than that of the general population. I am very, very lucky indeed.

The amount of gratitude I feel for the people and treatments that have brought me to this stage is overwhelming. I’ve started working again – slowly, carefully, gradually escalating my case load. I structure my day to ensure I don’t backslide into habits that have worsened my symptoms in the past. I’m proud of what I’ve been accomplishing. Things are going well, and I’m cautiously optimistic about what the future holds.

This was the story I needed to tell. As I said earlier, part of my motivation was selfish. I’d be lying if I said the process of writing it all down – confronting everything, even the ugly parts – hasn’t been cathartic. But, again, this isn’t just about me.

I’ve always known that there was a stigma surrounding mental illness, but being in the thick of it crystallizes just how bad it is in spectacular ways. I suddenly became hyper-aware of how often people throw around the term “bipolar” or any number of other words related to mental health in derisive manners. Each instance hit me like a slap across the face.

No offense folks, but unless you’ve experienced the paralyzing, hopeless stupor of a depressive low or the dizzying, terrifying frenzy of a manic high, you’ve got no right to throw the word “bipolar” around like it’s nothing. It’s right up there with using the term “gay” to describe something you don’t like, in my book. Knock it off. My life is not your punchline.

A great deal of the stigma surrounding mental illness comes from what most irrational behaviors and fears stem from: ignorance. Bipolar Disorder and the myriad of other mental illnesses human beings encounter are complex and challenging. We’re a long way off from understanding the what and the why and the how of it all, but in the meantime, these are still human beings we’re talking about. Mental illness is not a character flaw. It is an illness, with those diagnosed no more to blame for their symptoms than a cancer patient is for their tumors. For the love of God, show some compassion.

As I write this, I know I’m taking a risk. This confessional and the lack of understanding of my illness among the broader population could very well impact my professional and personal life in definitively negative ways. But illness or no, I still consider myself an advocate, and those struggling under the weight of their illness and an undeserved stigma deserve advocacy. I would have felt like a hypocrite if I hadn’t given voice to this pain.

To be very clear, I don’t assume to speak for everyone who has ever been diagnosed with some form of Bipolar Disorder. My experience is my own, and theirs is their own. I only hope that in sharing this story, someone gets something out of it. Maybe they feel less alone. Maybe they find the courage to get the help they need instead of suffering silently for a decade. Maybe they better understand the people in their lives who are suffering, or make a renewed attempt to get there. Maybe they change the way they view Bipolar Disorder or mental illness in general. Maybe they’re able to share the story with someone else who needs to hear it.

This story needed to be told, but – unlike the stories in which I so often find solace – it doesn’t have an ending yet. It will continue, with me doing everything in my power to stay healthy.

I will keep fighting the good fight, because there are issues that deserve my attention with a clear mind and heart.

I will keep fighting the good fight, because my family and friends deserve better than the unreliable mess I’ve been for too long.

I will keep fighting the good fight, because my daughter deserves better than a basket case for a mother.

I will keep fighting the good fight, because I deserve happiness and love.

This story isn’t over, but I’m sure glad you took the time to read where it’s gone so far, and hope you stick around for the chapters to come.

 

Looking for help? Want to be a better ally to those in your life who are suffering from or managing mental illness? Knowledge is power. I highly recommend the following resources:

Bipolar Disorder: A Guide for Patients and Families 3rd Edition by Dr. Francis Mark Mondimore (It’s essentially become my Bible, and no, I won’t make money if you buy it.)

The National Alliance on Mental Illness (NAMI) for information and support groups

The Depression and Bipolar Support Alliance (DBSA) for information and support groups