My Scarlet Letter

Most people are familiar with Nathaniel Hawthorne's The Scarlet Letter. A great deal of people have studied how Hitler's Germany branded Jews and other "undesirable races" with a patch or armband. The concept of 'marking' people who were considered undesirable is nothing new, in fact, most people think it's a quite antiquated concept. But it's not. It's alive and well in America, in YOUR city, today.

I wear a scarlet letter. Actually it's more of a purple smock type garment with three arm holes that neither fits nor flatters anyone. But it's my scarlet letter. Upon admission to the hospital, patients with psychiatric issues are not given the standard blue and green gown that ties in back and shows most of your backside if you're not careful. Patients with psychiatric issues are given The Purple Smock. It's bright purple. I mean, you can't miss it. It's one-size only, it hangs off just about anyone's shoulders, and it's nearly impossible to keep everything covered while wearing it. It's just a really rather unpleasant thing to have to wear.

But what's worse is that it brands you. Right now I'm in a mixed ward - patients with physical issues, but some of whom also have psychological issues. Because of the 'episode' I described in my previous post, I have been relegated to the group with psychological issues and branded with The Purple Smock.

When you're wearing The Purple Smock, people stare. Some people, family members or other patients don't really know what it means, but many do, and all the medical personnel do. Just like with Hawthorne's Scarlet Letter, it immediately tells anyone who sees you that you are different - and not a good different. You are defective. You have done something or said something that earned you that detestable garment, You are the book, and you are very much being judged by your cover.

So, knowing upon sight that you are 'crazy' or 'SI' as they like to refer to us, people treat you differently. Again, you'd like to think that hospital employees are a little more professional than that, but they're not. They're human like everybody else and they know what The Purple Smock means. Suddenly every word out of your mouth is called into question, every action scrutinized. You have to try to decode if people are really taking you seriously, or if they're just nodding and smiling, all the while knowing you're crazy, and applying the stigma that is so often attached to that. This is hard enough for most people to do, but people with psychological illness struggle enough to decipher what is going on in most social situations. Psychological illness SUCKS. I'll flat out say it, it SUCKS. Being labeled and stigmatized, on top of psychological illness? That's just like kicking a person when they're down - and if you think it doesn't affect the treatment they receive, you are deluding yourselves. The Scarlet Letter, still exists - it's just a purple smock now... and I don't know about you, but I'm ready to take it off.

#SHATTER STIGMA

Episode

Yesterday, I had an episode. That’s what I call them, but I guess it doesn’t give you very much information on what I’m actually referring to. As most, if not all of you know, I have Borderline Personality Disorder. After participation in an outpatient treatment program a couple years ago, I am managing my illness much better and the good days certainly outnumber the bad, but every once in a while, one of those days pops up that just seems determined to break you. On those days, I’m not proud to say that I still don’t cope well. Those are the days I have ‘episodes’.

An episode means suicidal. It means I’ve lost control of myself, my environment and whatever situation I’m in has gotten past all my defenses and taken over control of my body, my mind, everything. In a way, I cease to be ‘me’. Friends and family have told me they don’t recognize the person they see during one of my episodes. I want to try to explain why. I’m going to use an incident that happened yesterday to illustrate, by making this post my open letter of apology to everyone my behavior affected.

To whom it may concern:

Before anything else I would like to apologize for my behavior yesterday. I would like to explain to you exactly what I personally perceived which generated such an extreme response, but in no way do I intend these explanations to serve as excuses for the way I acted. I understand that each person’s actions are their own to claim, regardless of state of mind.

Something most of you probably know is that I suffer from Borderline Personality Disorder. A big part of this disorder for me is that I am very sensitive to social interactions. I often perceive people as being hostile toward me when they are not, or suspect people are lying to me when no one else seems to think so. Those are just a couple of examples. Often,  a family member or trusted friend helps me interpret the world around me so that these misperceptions do not interfere with my ability to function to too great a degree. Other times, however, when no one is there who knows and understands how the disorder manifests in me particularly, I tend to base irrational actions on those flawed thoughts.

This is essentially what happened yesterday. Yes, the initial reason I was upset was because I couldn’t understand why small changes to my care couldn’t be made. I should have been able to realize that (a) I didn’t get to make the rules and (b) the rules weren’t intended to do ill toward me, but because I do not perceive things normally, I couldn’t see those things – all I saw was judgment. I felt that by refusing to consider those changes to my care, the staff was judging me, labeling me in some way and, as I’m very sensitive to judgment, I did what of course is the hallmark of BPD – I *way* overreacted.

Today, with some perspective, I can see that it’s unlikely that the staff was actually thinking that way when I suspected it, but that my own actions lent credence to the theory I so strenuously objected to. It was that sense of being judged or not listened to, rather than the actual approval or denial of my request, that caused me to lose control and act out the way I did. Sometimes this is hard for me to explain to people who don’t have the disorder because from the outside it looks so much like it’s just a temper tantrum because I didn’t get what I wanted, but there is much more going on underneath. The situation escalated as I felt like more and more people were judging me, dismissing me, not understanding me, etc. Eventually I get to a point where this is so dominant in my mind that I start thinking my whole life will be full of judgment and that’s not a life worth living – thus the suicidal ideation and sometimes action. 

From the outside I can see how it looks like, when, after not getting what I want, I simply throw a tantrum over it, but on the inside, it’s no longer about whatever the original argument was anymore (which is why the original argument is often so trivial and people wonder why I react so strongly). What is happening is that I am losing control of whatever little part of me is restraining the other, bigger part shouting at me that people are judging me and that my life will always be that way and therefore I should just kill myself.

When I calm down, usually after some sort of pharmaceutical intervention as that’s all we’ve found to work thus far, that lying part of my brain recedes and I’m left wondering who that person was that acted so out of control, so irrationally. So not like me. At that point I recognize that my actions were destructive, that my perception was seriously mistaken at the time, and that I am ashamed of the way I acted. I usually see the other side of the initial ‘argument’ as well – and wonder why I couldn’t have just accepted it instead of freaking out. But then I guess that’s the disease. Later I’m sorry. Like today, I’m sorry. I’m sorry for the way I acted, I’m sorry for anyone I hurt either physically or emotionally, I’m sorry for the resources I forced others to expend trying to keep me safe from myself. If I had it to go back and do again, there’s no doubt in my mind that things would have played out much differently.

In any case, this is a somewhat simple explanation of one of the aspects of my disorder, but the one that is most relevant at the moment. I hope that in reading this and seeing my apology you can forgive me – and whatever loony-tunes bug got into my head – for the way I acted. I really am trying every day – and will continue to try – to moderate the symptoms of this disorder to allow me to live a more normal and hopefully much less dramatic life.

Thank you for your time in reading this. I know it is not an excuse, and I don’t intend it as one – I need to learn how to interpret the world around me accurately on my own, and that is something I will work on. My hope is that explaining my behavior from my perspective will help us all understand each other a little better. I know we can make strides in this area!

Regards,

Kate

Terminology

Thinking back quite a few years to when I was in middle school, I remember that I had something of a reputation. Not the one for being a social outcast, weird lunches, uncool clothes or being teacher’s pet, but one I created on my own. I was the “word police” – and there was one word that was the greatest offense. One that teenagers say every single day.

“Retard”.

It’s said to someone who has just done something foolish, someone you don’t like who just can’t do anything right, someone who gets in your way in the hall. The adjective form, “Retarded” is even more commonly used – to describe something that the speaker feels is stupid. In nearly every sentence, “retard” or “retarded” can be replaced with “stupid” and the sentence will still make sense. But what the word actually means is ‘to slow down’ or ‘having been slowed down’. Try inserting “slowed down” into some of those sentences. “This homework assignment is so slowed down!” No one would know what you were talking about, they’d probably look at you like you were... slowed down.

I lost a family member to Down Syndrome before I was even born. Back in the 1960’s when my uncle was born, children like him who just happened to have one extra chromosome were, at best, referred to as ‘mentally retarded’. This was, then, the kindest of the terms. To see the others we need only to look to places and people who have not yet shifted their vocabulary. In one Eastern European country, the floor of the orphanage where all the children with Down Syndrome lie in cribs, the label outside the door read “Malformations”. Ouch. There’s not even an ounce of humanity in that one. Others commonly used across the world, and indeed in the history of the United States, include “mongolian idiot,” “mongoloid” or just “idiot”; “imbecile,” “lunatic” and so many more. Most of them had faded or lost their association with individuals with special needs by the time I was in middle school, but such was not the case for “Retard”. So I made it my crusade.

Now there are campaigns by the number. “Stop the word to end the word”. People first language. Others have taken up the cause, and hopefully are reducing the use of this antiquated term which should not be considered synonymous with ‘stupid’. I personally have started choosing random physical afflictions and using them in place of the “R” word, as an illustration to the listener of how ridiculous it is to use a diagnosis as a put-down. My favorite is “Diabetic”. It usually earns me a double take after which I explain my philosophy.

Today, though, I realized that far more of the terminology we use is inherently prejudicial against people with mental and physical disabilities. In recent years, the DSM-IV, the manual used to diagnose psychological conditions, has been under revision to the recently released DSM-V. In the revision process there was much discussion of what ‘official’ titles to apply to various afflictions. When the first DSM came out, homosexuality was listed as a psychological disorder. In those years “imbecile” was a medical term. As we’ve added to our knowledge, we’ve changed our terminology. But the DSM-V still has what is, to me, a glaring and insulting error.

Mental illness is diagnosed along 4 axes. Axis 1 disorders can be cured, they are usually temporary or intermittent and though disruptive to the life of the individual, are often responsive to treatment. Axis 2 disorders, which tend to be lifelong, deeply built into a person and while therapy and medication can lessen their effects, neither can cure them. The DSM-V, like the DSM-IV before it, terms these conditions “Personality disorders”. This is the terminology with which I take issue. In a world where we are trying to decrease the stigma of mental illness, how can we still use this term?

You might wonder what’s so wrong with it, especially if you’re lucky enough to have escaped Axis 2.Well think about this. Someone falls in love, and when asked what they find so endearing about this person, the other might describe their sparkling personality, good qualities, attitudes, all those non-physical attributes which we use to define people are their “personality”. She has a lovely personality, he has one of those personalities that makes everyone feel at ease, if appearance is the essence of a person’s physical being, personality is the essence of their mental being. Can you imagine telling someone they had an appearance disorder?

I don’t know how we can expect to fight stigma when even the professionally developed material used to diagnose and treat us tells us that there is something wrong, something flawed about our very personality. It tells a group of people who are already prone to self-judgment that their personalities, the fundamental essence of who they are, is wrong, ‘disordered’.

Sometimes I imagine two people meeting on the street. One looks normal but carries an axis 2 diagnosis. The other walks with a limp. One feels physically broken. One feels mentally broken. One carries a diagnosis of a bone or joint disorder. The bone or the joint is broken, not functioning as it should. The other carries a diagnosis of a personality disorder. Logically then we must assume that her personality is broken, not functioning as it should. Her personality, the very essence of who she is, is wrong.

How does this message help the world understand her? How does it help her understand herself?

In other countries, so-called “personality disorders” carry various other names. If you’re reading this, by now I expect you know that I have a diagnosis of Borderline Personality Disorder. Elsewhere it is known as “Emotionally Unstable Personality Disorder” (so, you know, basically the same), or sometimes “Emotional Intensity Disorder”. I like that last one best. I can admit that above all, the disproportionate intensity of my emotions to the events in my life is what lies at the root of most of my distress. Further, the latter term removes the word “personality” from the equation completely (which, interestingly enough, has not been the major sticking point on how the disorder should be named). In doing this it removes the connotation “who you are” is not what is disordered. The subject is changed. It is your emotions that are disordered, because they are extremely intense. I can’t speak for the entire BPD community, but I personally can certainly admit that my emotions are often disordered due to their disproportionate intensity.

I don’t know what spurred me to write this today. I’m not feeling persecuted, I know that I am not a label and that I am not my illness. I guess I’ve just been thinking about the wider world, people who are newer to this game than I am, who might be hurt by an inaccurate or insensitive term. Maybe with time the terminology will change. Yesterday’s “malformations” are today’s children with special needs. Maybe – just maybe, in 60 years, today’s “personality disordered” will be called something else, something less stigmatizing, thus helping us erase the stigma from all aspects of our lives and all corners of the world. This is just my attempt at giving the process a little ‘jump start’.

My Job

The first time I remember somebody asking me what I wanted to 'be' when I grew up, I was at my grandparents' house. I was scribbling away in a composition book that I was determined to turn into a chapter book (with pictures of course) when my grandma asked, and I told her I wanted to be a children's book illustrator. Yeah, my family got a big kick out of that one. Only I would pick such a specific, somewhat obscure career choice at six years old.

I went through a few more stages. Military, lawyer, military lawyer (what? I really loved JAG!), teacher, run my own daycare, own my own baby supply store, and ultimately I even went to college and got a degree in public health, as I liked to put it, "because I want to get paid to play with car seats when I grow up."

In the meanwhile I worked a few different jobs. I worked in daycare - taught preschoolers. I worked for the health department, the only job I ever had that actually fell into my field of study in college. I was a home health aide for a while, and then a nanny. When I quit that last job (which was more stress than it was worth), I remember thinking that I had no idea what I wanted to do next. At that point the only thing I wanted to be was a mom, and that's not exactly the sort of thing you find in the 'help wanted' section. I procrastinated on choosing something, which in the end actually worked out to my benefit.

During and after my time as a nanny, I was going through several evaluations to determine the extent of my psychological needs. I'd been diagnosed with depression since I was 14, but more extensive issues were quickly coming to light. I spent around a month in an intensive outpatient therapy program learning to deal with new diagnoses and coping skills. I'm being completely honest when I say that it's literally the best thing I ever did for myself. But at the same time, suddenly I was able to see how my mental health (or lack thereof, as the case may be) had affected every job I had ever had. I wasn't bad at any of them. I wasn't negligent. But I could have been better.

In those weeks of introspection, I realized that I had been expecting far too much of myself. The thought had never crossed my mind - all I was trying to do was work, hold down a job, which is what everybody does, right? Not too much to expect from myself, especially given my academic record. You grow up, you get a job. It's what you do. It wasn't until my CBT (Cognitive Behavioral Therapy) program that I figured out - all this time I'd been looking for a job, working for a few months and then moving on, I'd already had a job all along, and I hadn't been doing it.

When someone is diagnosed with a serious disease, everyone is quick to assure them that right now, getting better is their job, it's the most important thing. An athlete who suffers a devastating injury goes to physical therapy every day, and that's his job. Nobody would expect a patient of cancer, heart disease, kidney failure, to spend 40 hours a week (or more) wrangling toddlers or filling out needs assessments. It's absurd to think about... imagine your coworker, whoever is in the next cubicle or whatever the case may be, coming into work dragging an IV pole behind him. We'd all say, "Take some time off, take FMLA, you need to focus on getting better right now, that's your job."

So why, then, was I expecting that of myself? How could I, who knew what it was to struggle with mental illness, expect myself and others going through similar trials to just drag our treatment right along with us to work 40 hours a week? How could I expect others like me to work full time jobs while fighting mental illness every single minute of it? I couldn't - I couldn't expect that of others, so I couldn't expect that of myself - and looking back, I saw all the signs that I had been taking on more than I could handle, trying to work a traditional job while I was dealing with so many health issues (be they mental or physical). That was when I had to accept that I was, at least for now, disabled - and as such, my job was to get better.

I took it seriously. I still do. But from the outside I bet it looks like a whole lot of nothing, so today I want to share about my job. It started out similar to most jobs - with someplace to be at 9 am every morning - only the place I had to be was a CBT program, and the work I had to do was on myself. For close to a month I attended that program the way I would have attended school or work, but when it ended, I had to remind myself that I was still doing the job, even though I was now 'working from home'.

There were so many days when I felt useless and broken. There still are. There are days when I realize it's 4:00 pm and I'm still in my pajamas and haven't left the house. There are days when I see family members hard at work sometimes well over 40 hours a week and wonder, what the heck am I doing? I call it "a case of the 'should's". "I should have a normal job." "I should be making money." "I should be doing something with my degree." "I should work as much as my family members." Those are the times I have to remind myself that even though it may not look like it, I'm working as hard as anyone else.

I'm doing my job. I'm getting better - or at least getting through the days. It's hard to explain to anyone who hasn't experienced it themselves (and I wouldn't wish it on anyone), but the amount of work I can do without even getting out of bed is astronomical. Mental illness bombards its victims with constant negativity and distorted thoughts. We wake up thinking "Why even bother getting out of bed?", or "No one cares about me anyways," or "I can't handle life, I should just go back to sleep". We lie there for endless moments searching our consciousness for some shred of evidence to the contrary, something to throw back at those automatic, destructive beliefs. We wake up from terrifying dreams that are all too real and spend hours trying to convince ourselves that we are safe, that this time, it was just a dream. Some days we succeed. Some days we don't.

Every day, that war between such deeply held negative core beliefs, and the healthy ones we are trying to convince ourselves of, rages out of control. Whether I'm lying in bed, volunteering, walking the neighborhood, or cleaning the house, the battle rages, and it drains the energy right out of me no matter what else I'm doing. Some days the bombs are falling so fast that the only thing I can do is take shelter until it's over. Those days, nothing else gets done, but I've still worked all day - just, instead of working on a project or a presentation, I've been working to survive. At the end of the day, if I'm still alive and kicking, I've done my job.

Some days are a little easier. Some days, our minds are prepared for the enemy's onslaught, and we get up, get out of bed, get dressed, maybe even leave the house. Some days we're fighting so hard and with such determination that by the end of the day, we wonder why we can't just accomplish this much every day. And those days are nice, they're a breath of fresh air - but it's easy to fall into the trap of blaming ourselves that not every day is quite so simple. It's easy to wonder, why, if yesterday I cleaned the whole house, washed my car, went to the grocery store and worked a volunteer shift - why am I exhausted before I even get out of bed today? It's because no matter what my body is doing, my mind is fighting that very same war. It's because not every battle can be easily won.

So this is my message for those of you out there who are dealing with mental illness: KEEP FIGHTING THAT WAR! And be kind to yourself. Wherever you are, whatever you're doing, you are doing far more 'work' than even you realize, in every minute - and it's just as important as the work anyone else is doing. Let's stop beating ourselves up for 'not being good enough' and start thinking of ourselves like mental health warriors - slashing through dark jungles the likes of which most people can't even imagine.

And for those of you who have a loved one affected by mental illness, my message to you is this: What you're seeing, what you're observing, is only a tiny fraction of what we're going through. While we might look lazy or unmotivated to you, that battle is raging every minute. Be kind with us, be gentle with us, because after a hard day's work, the one thing we want the most is the love and support of the people around us. To know that whatever we're working through, however the battle may have played out each day, we are not fighting it alone.

Defective

It's been no secret over the past year that I've been in intensive therapy for mental health issues, even that I have a diagnosed personality disorder. Less often, I've shared with a few people that even an objective, official assessment of my functioning concluded that I am not currently capable of working or carrying any other great responsibility on my own. What I haven't shared so much, is how this whole thing makes me feel.

When I sat down in a Cognitive Behavioral Therapy (CBT) session a year ago, I was asked to identify the thoughts I had about myself, the core beliefs I held about who I was. I selected a few things.

"I'm a failure."

"I'm broken."

"I'm incompetent."

"I don't matter."

"I'm defective."

As I read through a list of common negative core beliefs, this one stood out to me the most. It's exactly how I'd been feeling - like somehow, between that day and the day God designed me, something had happened that had broken me, knocked a piece or two off, made me less than everybody else. Like I simply wasn't capable of the things most people are capable of, and that was my fault and it meant I would never contribute to the world in any significant way. I was broken. Send back to the factory, toss in the scrap heap, this one's no good.

Sometimes I still think that. 

But it was a few weeks into my intensive therapy program when I hit this startling realization, which is what I use to remind myself to this day, that everyone is flawed in some way and it does not decrease our worth, our contributions to the world. 

I'd heard "defective" used to describe human beings before, somewhere else.

Remember Katie?

Or how about Brett?

Or Marla?

All of these precious children were declared "defective" by doctors in their home countries, and as such sent to live in orphanages. Any child who was not adopted before their 16th birthday was transferred to a mental institution for the rest of their life. When Katie's mama went on that first trip to meet her daughter, the ward room that little girl was in was labeled "malformations".

Did I ever think of them that way? Malformations? Defective? 

Of course not, not for a second.

(And by the way, Katie has grown by leaps and bounds since she was adopted over 3 years ago)

NOT defective.

Down Syndrome. HIV. Cerebral Palsy. Osteogenesis Imperfecta. Limb differences. Arthrogryposis. Autism. Hydrocephalus. 

When they're present at birth, we call these diagnoses "birth defects". 

Like, because that child is different, she is somehow broken, less than. It's this idea that I've spent the last few years of my life fighting, tooth and nail, on behalf of kids like Katie, and Brett, and Marla.

The are not defective.

Even closer to home there are examples. Most, if not all of you should be familiar with the story of my mom's little brother, my Uncle Tony, who was born with Down Syndrome.

Also NOT defective.

The doctors said he would never walk or talk, he belonged in an institution, he couldn't learn, he was defective. My grandma and grandpa though, they looked at him and they only saw their son, who they loved no matter what the diagnosis, who they KNEW was not "defective". In the 1960's, this was a relatively uncommon attitude, and its always been one of the things I admired about my grandparents.

Then there's my best friend, Angie.

Try and call my best friend defective and I'll break your face.

She babysat AJ for me that day. From her wheelchair. Wearing her prosthetic leg. 

AJ was NOT an 'easy' baby. Anyone who took good, loving care of this little boy (with a set of lungs like you wouldn't believe!) could not possibly be defective.

Further, she was my best friend. And she had cancer. And it took her leg, and then her lung, and then her life. More and more cancer cells popping up with every scan, all over. 

Cancer means that cells grow in your body that are not supposed to be there and that cause you harm. Isn't this the very definition of a defect - a problem that is not supposed to be there? Well, maybe in the individual cells, but in the person? In my best friend? No, cancer did NOT make her "defective".

As I sat through weeks of CBT sessions this thought lingered in the corners of my mind. How could I call myself "defective" when I wouldn't call any of these human beings - souls that God made by His own hand and in His image, by that term? Was there a core difference, that because my problems were psychological instead of physical or developmental, I could be defective and they could not? Even I know that doesn't make sense. To further muddy the waters, what about those children with conditions that could be classified as psychological? Self injurious behavior, attachment disorders, even autism skirts the line between developmental and psychological - but none of those kids are "defective". For that matter, what about the person sitting next to me there, at CBT? Of course I would never describe them that way.

So what made me different?

Why was I allowed to be defective when I balked against the notion that any other human being be described as such?

C, my individual counselor in the program, told me that this was an issue of a lack of self compassion. A double standard wherein you hold yourself to a higher ideal, even an impossible ideal, that you would never dream of holding anyone else to. There was no difference, there is no difference. Physical, developmental, psychological, cognitive,whatever - PEOPLE ARE NOT DEFECTIVE.

I work with car seats a lot, helping parents keep their kids safe. Sometimes they're recalled because they are defective and may not keep a child safe. I put a CD in my disc player and for some reason, all it does is spin, no music. Either the CD or the player is broken, defective. But people? No.

People are not defective. People cannot be defective because each and every one of us was created by a loving God in His own image, and He does not make mistakes.

Struggles. People can have struggles. People can have problems, wounds, imperfections, but people ARE NOT problems, wounds, imperfections.... defects. People are people. There's no one way a person should be, no factory stamped seal of approval that declares a person "normal" or "right" - and if those things remain undefined, it is impossible to define "defective".

I'm not sure who I'm writing this post for. Maybe you. Maybe the world. Maybe me. Probably me. Because I still have to remind myself sometimes - okay, all the time - that I can't label myself as defective when I would not apply that word to any other human being. Knowing this doesn't make the emotions, the feelings of inadequacy go away - but it does give me a chance to question my thoughts, because I thought I was defective, but I just proved that wrong. Maybe I'm okay after all. Maybe I just have different kinds of struggles, maybe I'm striving toward a different kind of normal - just like all the other beautiful souls I mentioned. And that's okay, because isn't everybody striving toward their own normal, their own best?

It reminds me of a quote. "If you judge a fish by its ability to climb a tree, it will spend its whole life thinking it is stupid." (The attribution for this quote is disputed.) Everyone has their own unique abilities, their own personal goals, and NOT ONE OF US is defective.

A Short Story

The mother of two young children wakes up on a Saturday morning, and for one blissful moment, hovers in that state between asleep and awake where she's only partially aware of her surroundings.  Then in an instant it all comes rushing back... everything that happened yesterday, the painful treatment she had to go through at the hospital, crying because things felt so hopeless, not being able to do the things she wanted to with her children... and she feels crushed all over again.

She drags herself out of bed because she knows she has to care for her children, who will be waking up any minute (in fact, it's a shock that they're not already up!).  No sooner than she steps into the bathroom to take her shower, she hears the crying coming from her one year old little boy's nursery.  Followed by a loud yell of "MOMMY, THE BABY'S CRYING!" from her four year old daughter.  She sighs and retrieves her son from the crib, snuggles him, changes his diaper, and then, already exhausted, goes to the bathroom with both kids standing there vying for her attention.  She just wants to get back into bed... she feels so terrible this morning... not that it's different from most mornings.

Knowing she has to at least feed them some sort of breakfast, she pops in some microwave oatmeal, cools it off, and serves it to the kids.  She doesn't bother with making anything for herself... nothing agrees with her stomach lately.  Shower forgotten, after breakfast, the four year old (who is a little princess) is the only one who gets dressed.  She bounds downstairs with more energy than a small Midwestern town and chipperly asks "Mama, can we go to the park today?  It's pretty outside."

Guilt washes over the mother, knowing that there is no way she can take her daughter to the park on this admittedly beautiful day.  Just the thought of getting the kids and herself ready, loading them into the car, keeping an eye on them at the playground, loading them back up, and coming home, exhausts her.  Heart breaking because she can't give her daughter the kind of childhood she wants her to have, she says "Not today, sweetie, Mommy doesn't feel good."  The little girl nods - she knows what this means by now.

All day, the children's mother fights against feelings of panic, depression, exhaustion, and complete apathy.  She forces herself to do the things necessary for the health and well-being of her children, but it completely takes the wind out of her.  She wishes, over and over, that she had someone to help her with all this.  Her whole body hurts by now.  She just wants to collapse into her bed, or onto the couch, or even the floor at this point.  She hasn't eaten all day, yet she feels like she's going to throw up.  As she's fighting these overwhelming feelings, the guilt is overwhelming.  Her children deserve a whole mother, one who can do all the things she wants to do with them.  She hates that they have to understand, at such a young age, what it means when mommy doesn't feel good.  If she had a magic wand, she'd fix it all... not for her, but for her kids.

After a whole day of hearing other moms and dads outside playing with their children, reading parenting magazines about exciting springtime activities, the mother is feeling incredibly defeated.  If only she could do all these things for her children, who she loves a hundred fold more than herself.  If only she were healthy.  As she tucks them into bed, skipping baths because it's just too much today and asking them to choose a short book so she can get to bed herself, the thought occurs to her that this is what tomorrow will be like too.  Monday her children will go to a sitter while she is at the hospital... and then when they all finally get home, she will be too exhausted to really enjoy them.  Tuesday, the same pattern will happen again.  And over, and over, and over, for what seems like forever.  Sometimes she thinks she's never going to get better, that her children are going to grow up with only half a mother, that she is going to miss the golden moments of their youth.  She cries to herself as she falls asleep, praying for healing.

Having read all that, what are you thinking?  Keep in mind that this is a true story, a thousand times over.

The mom is obviously sick, but she's doing her best.  She probably needs some help at home.  What is she sick with?  Is it cancer?  Is chemotherapy why she's so exhausted?  Is it degenerative?  Will she die too young?  What horrific disease has stolen even the joy of playing with her children?

What if I told you that she is physically perfectly healthy?  That all her screenings have come up negative?  She doesn't have cancer.  She doesn't have heart disease or kidney failure or an aneurysm.  She has Borderline Personality Disorder.  Or Major Depressive Disorder.  Or Panic Disorder.  Or Bipolar Disorder.   It doesn't even matter which one, those are in a completely separate category for most people.  They are *mentally* ill... not physically ill.

I bet the first time you read this story, you felt sad for this young mom and wished you could help her.  Now go back, knowing what I've just told you, and see if you feel the same way.  Are you still sad for her?  Do you still want to help?  Or do you blame her?  Do you think she shouldn't have those beautiful children since she can't take care of them the way healthy person could?

I think most of us would like to say that it doesn't make a difference to us where the illness lies... but it does, because I've seen it.  Cancer is never anyone's fault.  A person with MS isn't expected to just 'push through it'.  Those of you who know me know that I help with car seat checks because motor vehicle accidents are a top cause of death in the United States and proper restraint can prevent that.  Public health dollars are allocated to these things en masse.

We find out someone we know has been stricken with a terrible disease, or hurt in an accident, and all the sudden a meal train is going on, people (some of whom you don't even know) are bringing you dinner every night, offering to clean your house, watch the kids for free, refer you to specialists that they know, offer a shoulder to cry on.  We find out that same person has a mental illness and we pull away.  Friends stop coming around so much.  They don't invite you to social events.  They tell you it's 'too hard' to be your shoulder to cry on.  There's no meal train.  No sympathy cards.  No flowers.  No concerned coworkers coming by your cubicle on the rare day you make it into work just to ask how you are.  Why?

In the 21st century, with everything we know about how the brain works, why would we treat it any different than any other diagnosis?  And because we do, how many people go without the treatment they need because they're terrified of the judgment that might come with a diagnosis?  For most physical ailments, failing to treat them *will* eventually be fatal.  Why would we expect any different of mental illness?  Just because it's a different part of the body?  Because there aren't quite so many awareness walks and ribbon months?  Because people you know don't just come out and say "I have a mental illness" they way they might say "I have diabetes"?  There have even been cases where social workers, knowing that the mother is mentally ill rather than physically ill, read the above story (in real life) as neglect and take the children away.  Would YOU seek treatment, knowing that in doing so you may lose the only parts of your life that still occasionally bring a smile to your face?

This has to stop.  It has to.  Because - and no, I'm not being overdramatic here because I have SEEN THIS HAPPEN - our inability to accept mental illness as something that occurs naturally, requires treatment, but does not change the person we know and love, IS KILLING PEOPLE BY THE THOUSANDS.  Look at the suicide rates in America over the past few years.
In 2010, suicide was ruled the cause of 38,634 deaths (up from 34,598 deaths in 2007) in the United States alone.  Motor vehicle crashes, however - admittedly an area in which I have done much research and volunteering, accounted for 33,687 deaths in 2010, having been officially surpassed as a leading cause of death by suicide.

Many people will say "Well then, why don't more people just get treatment?  They just shouldn't kill themselves."  But for what other illness or injury do we blame the victim for not getting help?

Make no mistake, suicide is a result of mental illness.  Physically and mentally healthy people do not just kill themselves.  Suicide is the 'terminal' of mental illness... only it isn't nearly as easy to predict or prevent.  Until we shatter the stigma associated with seeking treatment, so that getting help for mental illness is on par with getting help for physical illness, these suicide rates are going to continue to skyrocket.  Everyday people... mothers, fathers, sons, daughters, brother and sisters, are going to wake up every day and live the kind of life the young mother at the beginning of this post lived.  I wouldn't wish that on my worst enemy.

This month, May, is Borderline Personality Disorder awareness month.  The color is gray.  Admittedly, everything has a month, or a day, and a color, these days, and May is probably an awareness month for at least half a dozen other things, but my goal today is to shine a light on a dark corner of MEDICINE that is rarely seen or heard outside the clinics where it is treated and the lives of those who suffer it.  BPD CAN BE FATAL!  It can kill you just like any other disease!  10% of BPD sufferers eventually end their own lives.  It would not have to be this way if we could erase the stigma of seeking treatment.  This is only the first of my posts on the topic.  And I'm not saying we need to start up meal trains every time we hear that someone has BPD, starting tomorrow.  I'm not even saying that mental and physical illnesses CAN be treated medically in the same way - they cannot.  But what does need to change is our perspective.  Admitting mental illness should not be a source of shame or embarrassment.  It should be no more frightening to come out and say "I have Bipolar Disorder" than it is to come out and say "I have epilepsy".  The reaction to such an admission from a loved one should not differ.  That is the first step to stopping the epidemic rates at which mental illness affects our populations.

And that is something YOU can do.  Next time you hear that a church member has been hospitalized for a suicide attempt, don't avoid their gaze the next time you meet them.  Ask that awkward girl who mutters to herself how her day is going... and then just LISTEN to the response, no matter what it is.  Don't decide that these people can no longer be trusted or helped.  If and when it's appropriate, say something.  "Hey.  I heard you were having some problems.  Here's my number.  Please call me any time."

You might just save a life.

Endometriosis sucks.

That's it.  It just does.  There's no other way to put it, it just flat out SUCKS.

Imagine being in pain... ALL THE TIME.

After FIVE surgeries in as many years, intended to reduce the pain.

Pain so great that sometimes, all you can do is curl up into a ball and cry.

Pain so great that sometimes, you *choose* to spend a beautiful evening in the Emergency waiting room rather than outside, because you just can't stand it anymore.

Imagine living all, or almost all of your days, in that pain.

Going to work in that pain... trying to be productive... trying to forget how much it hurts.

Spending time with friends in that pain... unable to fully enjoy yourself because it hurts every.single.minute.

Attending special occasions in that pain... trying to smile and chat when all you can think about is curling up with a heating pad.

Harder still, attending things like baby showers, births, children's parties, mother's day lunches... in that pain.

That pain that constantly reminds you that you may never have the privilege of giving birth.

Praying you can still be glad for others who don't have to struggle in the same way you do.

Praying that the pain doesn't make you bitter.

Imagine thinking you were doing so well, having a good day... and then breaking down crying at the smallest thing, realizing you were really just holding it in all that time.

Imagine heading into another surgery... and looking forward to it, because it just might make the pain better.

Imagine being dependent on doctors and medications - often ones stigmatized by one group or another (birth control, pain medications, anti-depressants)... just to live a semi-normal life.

Imagine not knowing if you'll *ever* feel better...

Or knowing that you may have to have a premature hysterectomy just to gain some relief.

And that in doing so, you open yourself up to a whole host of other possible issues.

Imagine realizing you're lucky in so many ways... this disease is not usually fatal...

But the pain makes it so easy to forget... or not to care.

Imagine that this whole time, it seems like no one understands.

They label you:  Whiner.  Addict.  Downer.  Liar.  And so many more.

Sometimes, they even abandon you.  Your struggles are too much for them.

This is not a disease for which people can easily have sympathy.  There simply isn't enough understanding yet.

Google doesn't even recognize it as a word.

Imagine knowing that THIS... is your life.

There is no escaping it.

That's where I am, right now.  And I'm trying hard to push on, to be okay...

But sometimes, I just need people to understand... that they don't understand.

And that that's okay.

But be patient with me.

I'm fighting a battle you do not know.

Verses

Verses for my own peace of mind today.

Ephesians 4:32 

Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.

Matthew 5:44 

But I say to you, Love your enemies and pray for those who persecute you

Matthew 18:21-22

Then Peter came up and said to him, “Lord, how often will my brother sin against me, and I forgive him? As many as seven times?” Jesus said to him, “I do not say to you seven times, but seventy times seven.

Please, dear friends, add your own verses that you need to hear today, or verses that I need to hear today about God's forgiveness, and how we must forgive as He does, and about how God is with us even during the worst of times.

The Truth About Mental Health in America

This post is hard to write.  No - not hard to write - most of it I wrote down a long time ago.  It's hard to share.  It's hard to share because of the stigma associated with mental illness, because of how difficult it is to be honest with myself and with the world... but those same things make it so very important to share.

On the heels of last week's horrific shooting at Sandy Hook Elementary School, people around the country and around the world are talking about gun control, and about mental health.  I won't pretend to be an expert on gun control or gun violence and I don't feel I have anything to add to that discourse that someone else can't state better - but on the topic of mental health, I can't be silent, because I do have a perspective that not everyone shares.

I want to be very clear about something.  I do believe that the Sandy Hook shooter, and anyone else who commits similar acts of violence, is mentally ill.  I believe that their actions alone make them mentally ill.  Anyone who thinks something like that is ever okay, who would ever perpetrate such horrors, has a very serious problem.  HOWEVER - I do not believe, and I hope that others do not believe, that all mental illness causes people to become violent or even unstable.  Thousands of people manage mental illness successfully every day - I am one of them.

Mental illness is like any other kind of illness - except that the research is so relatively new and the brain is so difficult to study that we know little about it.  Like cancer, it manifests in different ways.  Not everyone who has cancer has a brain tumor.  Not everyone who has a mental illness exhibits violence.  Like heart disease, it varies in severity.  Sometimes it can be managed with a few lifestyle changes - sometimes it is serious enough to require hospitalization.  People with mental illness, like people with diabetes or people with osteoporosis, live otherwise normal lives.

Sadly, mental illness is not treated the same as these and other medical conditions.  Because it is misunderstood, it is seen as something people need to 'get over', something to be feared, something hush-hush that no one wants to talk about.

This is not okay.

Go back to the hardest time in your life, the worst thing that has ever happened to you, and imagine if the entire world made you feel ashamed to express your feelings about it, judged you for having experienced it.  Imagine how that would magnify your struggle.  This is what people with mental illness face every day.

It's okay to throw "oh yeah, I take medication for diabetes" in conversation, but the room suddenly goes quiet if you admit "I take Prozac for depression".

It's time to change that status quo.  The stigma associated with mental illness is one of the most serious barriers to successfully treating it.  Who wants to go to their doctor and admit to suffering from a type of illness that is still largely considered socially taboo?  Who wants to have to explain therapy appointments to friends and coworkers?  What parent wants to admit that their child's mind is sick?

If it was socially unacceptable to have a mammogram, wouldn't breast cancer become deadlier?  If testing your blood sugar was something not to be done in public, wouldn't it compound the problems associated with diabetes?  So why, then, would we not expect the stigma associated with mental illness to change its impact on society?

This is the first thing that needs to change.  It is an attitude, and the only one who can change it is you.  The power is in your hands.

Now, here is where this gets difficult to share.  The second thing that needs to change is the actual treatment of mental illness.  I'm talking about doctors, hospitals, medications, laws, procedures.

Decades ago, the mentally ill were imprisoned along with violent criminals.  Any form of treatment was nonexistant and little or no differentiation was made between the mentally ill and those guilty of criminal activity.  Then a woman named Dorthea Dix, among others, witnessed this inhumane treatment, the suffering endured by the mentally ill at the hands of penal institutions, and a call for reform came about.  Dix is now famous, her name in history books, for her reform of the mental health system in America.

But as is often the case, change was slow to come.  If not imprison them, what could society do with the mentally ill, who were still so badly misunderstood?  Psychiatric institutions sprung up around the country - supposedly specialized hospitals that were intended to care for the mentally ill in a residential setting, removing them from prisons but providing them the day to day help they were perceived to need.  It was, in theory, an excellent plan.  But in practice, it was a flawed plan - a first step in a long process.  Because in order to be a 'specialized hospital' for the mentally ill, specialized knowledge of mental illness was necessary, and the research just wasn't there yet.

For decades, patients were treated with lobotomies, blood letting, organ removal, electroconvulsive therapy and hydrotherapy (which then was less like a class at the YMCA and more like torture).  "Insane Asylums" became places to be feared, places where not only were people imprisoned against their will, but they were subjected to inhumane "treatments" and the violence of other "patients".  Abuse and overcrowding became rampant.  Children with disabilities were abandoned to institutions, considered 'defective'.  America's mental health climate looked much like the orphan crisis in Eastern Europe, which I have shared often, does today.  You've seen those pictures.  Would you seek treatment if the answer was to be shut up in one of those institutions, where abuse, starvation, and filth are the norm?

So, as many Eastern European countries are currently trying to do, America went through the process of deinstitutionalization.  But what to replace it with?

By this time, research had come along a bit and doctors were realizing that mental illness could be successfully controlled, even treated, with medication and therapy.  Finding the right medications proved to be a delicate balancing act that the medical community is still figuring out.  What type of therapy was best is still a topic of debate.  But the days of cutting out body parts in hopes of getting the "bad" part were falling by the wayside.  Another step forward.  Insane asylums were renamed Psychiatric Institutions and then Mental Hospitals.  Later, psychiatric wards were added to mainstream hospitals as professionals sought to treat mental illness based on a medical model.

As people were treated successfully, they were often able to live on their own or with minor assistance, and the need for psychiatric institutions dissipated.  The doors of most of these places closed for the final time in the 1980's and 1990's.  Not so long ago, huh?  Some of you might remember, in the preceeding decades, that each county had a specialized hospital for the treatment of tuberculosis called a Sanitarium.  Where was the last Sanitarium you visited?  Our knowledge of TB and its treatment grew with leaps and bounds, and eventually patients were treated in mainstream hospitals, and today, many of them are medicated at home.  Still though, our local health department has a special department for managing tuberculosis.  The Sanitariums have disappeared, but the problem has not.

So why would we think that since the Insane Asylums have disappeared, that mental health problems no longer exist - or that they are somehow less deserving of our attention?  And yet, every year, funding is cut to mental health services at every level.  With few resources and little support, what is the medical community to do about the still existing - no, increasing - problem of mental illness?

If you don't personally struggle with mental illness or are not intimately involved in the care of someone who does, I bet you don't know.  I'm sure most of you have a cursory knowledge - psychologists, psychiatrists (quiz time - do you know the difference?), medications, suicide hotlines, school services, occasionally hospitalizations.  But what does that look like from the inside, and if the barbaric mental institutions of our country's past are gone, why do so many people still avoid seeking treatment?

The answer is simple, but horrifying.  The large scale use of 'insane asylums' may be gone, the terminology may have changed, but like the illness they were designed to treat, the abuses that occurred there have not gone anywhere.  It's simply not as visible as it once was.  You'd never know it, unless you'd been there yourself - and let's face it - once you're labeled with mental illness, who's going to believe you?  I'm sure we'd all like to think that society does not judge the validity of a person's word by whether or not they struggle with a certain issue, but it does.

How do I know?

I've been putting this part off because it's so difficult.

I've been there.

When I was fourteen, I was diagnosed with depression and panic attacks.  Doctors noted that some of my behavior exhibited a tendancy toward obsessive compulsive disorder.  I was treated with therapy alone for a few months, until I started high school and started having paralyzing panic attacks several times a day.  It was then that I began treatment with medication.

For the most part, my early experience with the mental health system was exemplary.  My therapist was excellent, understanding and kind and helped me work through a great deal.  The addition of medication to my treatment was successful and I got my life back.  For a while, I'd been unable to function, barely getting out of bed in the morning, not eating because panic attacks are hard on your digestive system, not accomplishing anything, coming home and crying for hours, afraid to be alone.  For most people, it's natural to want to ask 'Why' when someone makes an admission like this - but I cannot give you an answer to that question.  Why is a person diabetic?  Why does a young child who has never engaged in any risk behaviors develop cancer?  Answer for me these things, and I will tell you why a person struggles with mental illness.

So there it was.  I was treated successfully for many years.  Then, when I was 21 years old, I began to feel like the medication was not as effective as it once was.  My doctor and therapist agreed that it could be losing effectiveness since I'd been on it for so long.  The doctor decided to try a new medication.

I will not share the details due to their personal nature, but let it suffice to say that the new medication did not work for me.  In fact, I had what is called a paradoxical reaction, meaning that the medication made my depression and anxiety worse.  Though I have chosen not to go into detail in such a public arena, you can all rest assured that I was never 'psychotic' and I never hurt anyone or even wanted to.  I simply struggled with myself, as I had done before I was treated, only it was magnified by a medication with which my body chemistry was incompatible.

By the time this became clear, it was a Friday afternoon and I was unable to obtain treatment from my doctor's office.  I felt that it couldn't wait until Monday, I had already suffered long enough trying to give the medication 'time to take effect'.  I chose to seek treatment in the emergency department of a local hospital, which is the recommended course of action for anyone experiencing a psychiatric crisis when they cannot be seen by their regular doctors, whether they are violent/dangerous or not.  Again, I was not.  All I wanted was help.

My treatment was grossly mishandled by hospital personnel.  I spent an entire day in the emergency department while they called all the local hospitals with psychiatric departments to see if they had a bed, after I agreed to be admitted for treatment.  Having no prior experience with psychiatric hospitalization, my expectations of what to expect were very wrong.  I'd visited my best friend in the hospital when she was on chemotherapy.  She was in a room with a bed and a couch, checked periodically by doctors and nurses, given the medications she needed when she needed them, brought meals, and visited by family and friends day and night.  This is what I expected of modern day psychiatric treatment - after all, like most of the hospital's other patients, all I needed were medication and therapy.  This is why I agreed to be admitted.  Why I chose to seek treatment (and, up until that point, didn't understand why anyone would choose otherwise - why suffer?).

Unfortunately, I was very wrong.  By the time they found a location with a bed, it was after dinnertime.  They came to me and told me that the only bed was at a local psychiatric hospital.  I hadn't even known hospitals still existed with the sole purpose of treating psychiatric patients.  I was nervous, having already learned far too much about the history of mental institutions in this country, and I didn't want to go.  I asked if I could wait for a bed in the regular hospital's psychiatric ward.  I was told no.

This entire time, the patient in the alcove next to me, who seemed to be experiencing a more severe psychiatric crisis, shouted, swore, and eventually was restrained to her bed.  I was scared.  Would they do that to me?

I didn't want to make a fuss.  I didn't want them to treat me like that.  After a few tears, I willingly took the medication they gave me and waited to speak to a social worker about my concerns with going to the psychiatric hospital.  What I didn't know was that the medication they gave me was a powerful sedative, and by the time I saw the social worker, I was in no condition to refuse the admission.  I was transported via ambulance to the other hospital.  I was scared, but I still thought I was making the choice to do the right thing to help myself.

My mom followed me there in her car and sat with me while I signed papers, my head still foggy from medication.  Then, a woman prompted me to say goodbye to my mom - that she could come back the following day during visiting hours - and led me through a locked set of doors.  Red flags went up in my head - the short 'visiting hours' described, the locked doors to the rooms which my mom was not allowed to accompany down, the loud noise that echoed from beyond those doors - but in my sedated state I simply thought "I'll talk to someone about that later".  I was led to a room containing two twin beds, a desk, two dressers, a sink, and a heavily plated window.  A woman put sheets on one of the beds and told me to rest.  The loud noise from the hallway filtered in, but I was too tired to think.  I lay down and fell asleep, the last thought in my head 'whatever's going on, I'll work it out after I take a nap'.

I lost my chance.  Somewhere along the line, something in my paperwork was changed without my knowledge or consent, and instead of being there voluntarily (which everyone indicated that I was - and the fact that I'd walked into the hospital of my own volition and signed all those papers seemed to express), I was placed on a mandatory 72 hour hold.  But I didn't know.  I tried to give this place a shot.

I asked where the doctors were.  I was told that they were home, in bed.  It was Saturday night, didn't I know?

Wait.  Hospitals had doctors 24 hours a day.  What was going on here?

Where was my nurse, then?

I had to wait, she would see me later.

I waited hours to be met with a dismissive woman who had little power other than to get me a cup of juice and a sandwich "because you missed dinner".

I couldn't sleep.  It was noisy.  Other patients were milling around the hallways in various states of dress, visiting each other's rooms.  A loud television blared in a common room filled with hard plastic molded chairs.  There were no clocks.  There were no mirrors.  Most personal effects were 'locked up' upon admission.  There were no visitors... only harried nurses in blue and grouchy orderlies in green scrubs who barked orders with a strange accent.

A scuffle occurred in the hallway.  One woman who seemed to suffer from some type of developmental disability was wailing in the next room.  An old black man in a hospital gown wandered around grumbling, occasionally stopping to shout expletives.  I didn't belong here.  I tried, I gave this place a shot, but there had to have been a mistake.  I wanted to go home.  I asked to leave.

No.  You can't go home.  You are on a mandatory hold.  We will talk to someone tomorrow, maybe then.  Over and over I was lied to.  You can go home after you talk to the director.  You can go home if the doctor releases you.  You can go home on Monday, then your three days will be up.  Nevermind, only court days count.  We don't know when you can go home.

Why am I on a mandatory hold?  There must be a mistake.  How can I clear this up?

Someone will be in to talk to you.  We'll discuss this in the morning.  The doctors will be back on Monday.

Out of sheer naivety, I believed them.  Only a little longer.  If I could just get through the night.  Then - it's only one more day, you can do it.  Then Monday came, and I was up early waiting for the doctor.  I tried to choke down some powdered eggs in the cafeteria.  One woman, who'd seemed relatively normal to me up to that point, dumped hot coffee in the lap of the old black man, who'd taken to shouting "KILL THE WHITE BITCHES!" at random intervals.  Two nurses called in sick.  One nurse was assigned to guard the perpetrator of the coffee incident one on one.  This left one more nurse.  There were at least twenty of us, male and female, ages 18 to 65.

After breakfast I waited in the hallway.  I didn't want to miss the doctor.  Where was she, I asked the passing nurse?

It's only 10 AM, she's not here yet.

Only 10 AM?  So much for doctors working crazy hours.  10 AM on a Monday and the rest of America was at work... but not the only doctor who could see me at the hospital.

The developmentally disabled woman scratched the nurse.  The nurse scratched her back.  She screamed and bit the nurse.  The nurse retrieved her partner and forcibly gave the woman a shower.  She screamed the entire time.

Finally, as I sat in my room alone, an older woman came in.  The doctor.  A psychiatrist.

I tried to explain the mistake to her, like the director had told me, so I could go home.  It was Monday.  All I needed was her clearance.

She told me that I could not go home and she wanted to change my medication.  I started to cry at the thought of another day at this place.  She took this as a refusal to comply with her medication suggestion and made to leave the room.  Sobbing, I called for her to wait and agreed to the medication, thinking that at least if I was cooperative, I'd go home sooner.  I was given no information with which to make this decision.  I didn't care.

She left.  A nurse brought my medication.  I vied for the one phone in the ward, trying to get a chance to call my own therapist, my own doctor, to help clear up this mistake.  Apparently everyone wanted the phone.  Someone tried to hide it in their room and it was confiscated before I got a call back from anyone.

I was given a roommate.  A girl my age, maybe a little younger, who told me she was schizophrenic and this was her third time being hospitalized, but that she had never been to this place before.  She was nice enough.

An orderly called us all together in one of the common rooms and handed out papers.  It was like the first week of home economics.  "Say one thing about yourself.  Change the following statements to "I-statements" statements - for example, instead of "Christina, you always tell me what to do!", how about "Christina, I feel (frustrrated) when you (tell me what to do)"?"  The doctor was not there.  The nurses were still with the coffee girl and the developmentally delayed girl.  The orderlies ran the "therapy" session.  The angry young white man who'd walked around all night with a boombox blaring, demanding painkillers, shared his "I statement".  He said, "(Other patient), I feel pissed off when you are such a bitch."  Laughter.  An elderly black woman clued me in that she was making sexual advances toward a new patient because he had smuggled in some marijuana.  (As a side note - these seemingly judgmental or gender/race descriptions are here only because everything was based on perception and a person's willingness to share details about themselves.  The names I knew, I am choosing not to share for the privacy of those involved.)

My parents came that morning to try to get me out.  They met with the director and the doctor.  The doctor told them lies about me and refused to release me.  When my parents became angry and threatened not to leave without me, they were told that if I left the facility, the police would be called to bring me back.  I got into trouble for trying to signal to them out the window as they left - just to ask if they were coming back later for visiting hours.  I was so scared, I thought the orderly was going to hit me.  I was left staring out the window crying as my parents drove away.

After lunch, I settled in my room to chat with my roommate.  We were talking quite amicably about Buddhism.  The orderly with the strange accent came in to yell at us for not being more social, and told us that we would never get out if we weren't more social.  The girl and I looked sideways at each other, as if to say, 'Who, exactly, are we to be social with?  The man shouting obscenities, or the girl throwing coffee?'.

Then an alarm sounded.  I didn't know what to do.  What kind of alarm was it?  Fire alarm, it turned out.  But what to do?  The doors were locked.  We were herded into a hallway to wait while someone fetched a key.  Then we were led out to an enclosure fenced in with tall barbed wire, at the greatest distance maybe three yards from the building.  My roommate and I watched as young children were herded into a similar enclosure.  My heart broke as I realized that these little kids were in the same prison I was.  Then one of them, a boy maybe 7 or 8 years old, gestured as though he was shooting us with an automatic weapon.  "Tch-tch-tch-tch-tch-tch-tch", he went.  Later, I asked the nurse how young the children were.  She told me they were as young as five.

In the evening, after visiting hours (the one time I got actual food to eat - my family brought it to me.  Let me just say this - powdered eggs are an abomination that should not exist.) the grouchy man in green ordered us all up against a wall.  Apparently, since they were short handed and hadn't been supervising visitation, someone had been trying to smuggle in cigarettes.  They made to search us until the perpetrator came forward, then they let us go reluctantly.  Again, I was scared.  But later, I was sorry they hadn't searched us, because the angry man with the stereo was whipping out a lighter to show off.

I couldn't sleep again.  I had a sinus infection and asked for some benedryl or robitussin for my cough and sleep.  I was given an unidentified pill 'for sleep' - and at that point, I cared so little what happened to me, I took it without question.  Apparently I slept through another episode with the developmentally disabled woman next door, until a woman came and pulled me out of my room.  A doctor, but a different one from the day before, and she seemed to listen to me more and did not lie or make false promises about when I was getting out to coerce me into submission.  She changed my medication again, but with an explanation this time.  Then she told me that if she, a social worker, and the director all agreed, I could go home that day, or maybe the next day.  I hesitated to believe her, and I hadn't seen a social worker in three days, so I wasn't sure when that was going to happen.  Later, other patients (who weren't violent or frightening enough to be noticed) told me they'd been there over a week and still not seen a doctor.

After breakfast, a nurse brought a young black girl into the ward.  She introduced herself to me and told me that she was there because she had run away from her foster home, that she'd been there a week, but today was her 18th birthday, so she'd just been transferred from the juvenile ward.  As we talked, the old black man in the hospital gown ambled down the hallway and sat on the ground near us, his hospital gown coming open and revealing that there was nothing underneath.  Yeah, there are things I just didn't ever need to see.  We went into the new girl's room to talk.  I asked her why she still had to be here if she was 18, so she should've aged out of the foster care system.  She told me that she was awaiting a competency hearing to decide if the state could keep her in their custody longer.  She told me about abuses she'd witnessed in the juvenile ward.  She told me the only way it was better there was that she felt safer because she was the oldest.  She and I were both intimidated by the residents of the adult ward - and I felt for her that her 'birthday gift' was this demotion.  At lunch, I sat with her, my roommate, and the elderly black woman.  We tried to ignore the fight that broke out right under the noses of the staff as the meal ended.  And by under their noses, I mean they watched.  Laughed.

I did manage to speak to the social worker after lunch, and she saw no reason to keep me there.  I was told that I would be discharged as soon as my papers were in order.  This took hours, but I got to go home after dinner on Tuesday.  Finally.  And the only way I was better than when I came in, was that I had a newfound sense of appreciation for my freedom.  I remember telling my mom "If you weren't crazy when you went in that place, you will be by the time they let you out."

The medication they put me on turned out to make me physically ill and prone to crying jags.  This time, I avoided seeking help.  Seeking help is what got me locked up like a criminal, or an animal in a cage.  I suffered for nearly two weeks before I saw a new doctor who finally straightened out my medication.  By the time I was back to normal, my life had been near completely derailed for almost a month.

I realize that my description of my experiences is long and contains what seem like insignificant details, but I shared it this way because I want you as a reader to understand as much as possible about the experience of actually being there, without having to go through it yourself.  I wouldn't honestly wish that place on anyone.  My point here is that I sought treatment - did the right thing - and for my trouble I was locked away like a criminal in a place that made me fear for my safety and where I witnessed abuse and gross medical neglect.  I told my therapist later (who was disgusted by every detail) that it was as though I'd walked into a scene from 'One Flew Over The Cuckoo's Nest'.  I filed a complaint with the state board of medicine.  I called two news stations, both of whom told me they'd been contacted about that hospital before, even about a rape that occurred a year before I was there, and were unable to report on the conditions because it was a closed facility - meaning the only way in is to be admitted.

I can honestly tell you that if I were to experience a psychiatric crisis in the future, the hospital would be the last place I'd go.  It's easy to say 'seek treatment' if you've never had to do it yourself.  It's easy to expect people to give up their freedom, subject themselves to the unknown, if you haven't seen these things for yourself.  It's easy to think that the days of abuse of psychiatric patients passed along with the 'insane asylums' (which, incidentally, were mostly just relocated and renamed and kept hush-hush.) when you haven't been personally faced with that abuse.  How can we ask people who are struggling to seek treatment, if this is what they can expect when they do?

If we, as a country, as a people, want to fix the mental health system in this country, we must first recognize all the ways in which it is broken.  Abuse.  Neglect.  Misunderstanding of medical conditions.  Coercion.  Judgment.  Fear.  Stigma.  Lies.  Do not fool yourselves into thinking these are things of the past, or things that happen 'somewhere else'.  They happen here.  In your own back yard.  To your own friends and family members, who, for the most part, are too ashamed to ever speak up.  And even when they do, no one believes them, or no one is willing to take 'meaningful action' (in the words of the President).  This place I was imprisoned?  It's less than two miles from my house.  I never even knew it existed.  When I got out I was overwhelmed for a while with guilt for the people still there, the people who had suffered along with me, who might not have had the resources to get themselves out of the clutches of the system and on to better treatment.  As I write this, there are still people in that place, no doubt suffering the same way.

I don't have the answer to the mental health crisis in this country - only my personal experience, which has told me what the answer is not.  And the answer is not caging up people who seek help like animals and mistreating them.  If we want things to change, this has to end - now.  I urge all of you to support mental healthcare reform, to be a voice for the voiceless in these institutions in our own back yards, and not to tolerate the culture of exploitation and abuse of the mentally ill that grips our society despite reform attempts reaching all the way back to Dorthea Dix.  Be the face of change.  Take meaningful action.  Don't wait for someone else to do it.  It's up to us.

I left twenty people in that ward.  I promised some of them that I would tell the world the truth.  I promised them that I would try to help them.  This is me trying to make good on that promise.  I'm sorry that it took a tragedy like Friday's shooting to encourage me to speak out above the stigma.