Closure

Closure. If you're like me, when you read that word, what immediately jumps to mind is the phrase 'closure is a myth'. But upon further rumination, I have to disagree. I think if we look instead at what the word is really intended to mean, we will find that we are simply misinterpreting the concept of 'closure'.

According to society, closure is supposed to be an end. It's supposed to be the light at the end of the tunnel that is grief, suffering, or trauma. All too often, people struggling through difficult times find themselves frustrated when that 'end' comes, and we don't suddenly feel better. But closure is not erasure, not forgetting, not 'coming around' to see things differently. Closure changes, not erases, the pain that preceded it. We don't like, we don't forget, we only begrudgingly accept our pain - but somewhere along the line, it gets a little less cumbersome to carry around with us. That's what closure really is - a slow, gradual process of learning to live with things we'd rather not.

Our society seems to think that closure comes from some action, either on the part of the sufferer or by some legal, moral or ethical system. Once we put the bad guys behind bars, the victims will have closure. Once we find out what happened to the missing person, their family will have closure. Once we lay our loved ones to rest, we can find closure. That notion, that performing some human action somehow triggers this magical peace called "closure" to fall upon us, is one of the most damaging approaches to the grief process.

Loss doesn't end when 'answers' are found. Pain doesn't stop hurting when justice is done. Grief isn't over when the funeral service is. In fact, these are often the most difficult times for sufferers and mourners. When everything is sorted out, put away, packed into neat little boxes, when everyone else goes back to their lives, and a hurting person must try to go back to their life, the way it was before tragedy struck... that's the hardest part of grief.

You go to work or school the next day. Everyone is talking and laughing and there are posters for upcoming activities or achievements, you are expected to go back to being productive, to getting things done, as if the trauma you experienced didn't just happen... that's when you want to scream. Everybody seems to think you'll be 'okay' now, and you're just not.

Several years ago I lost my best friend Angie to bone cancer. She fought it for over five years, lost a leg, a lung, her hair over and over, and then God called her home. The whole time, Angie had this attitude, this way about her that just made all of us forget, just for a moment, the monster in the room (the dreaded C word) - and just have fun being together. Angie was the best person I've ever known. The day before she died, I sat by her bed and held her hand and promised her that we would be okay, that it would take time but we would get there.

The day she passed, hospice came and cleared out all the medical equipment. The funeral home came and took her after a couple hours. The pastor from the church came and talked to us. We all started planning services and tributes and all the arrangements that come with losing someone you love. We set to work for days, put together a visitation and a funeral service, came together to remember our lost loved one... we cried, we laughed, we experienced it together, and if you weren't okay - well, that was okay too.

Then the funeral service was over. We had dinner together and then everyone went home. The next day was a weekday and I had to work. My coworkers were sympathetic, but no one could have stopped that first day back from being one of the hardest things I ever had to do. I remember getting up in the morning, getting dressed, thinking I was okay... driving to work, logging onto my computer, greeting my coworkers, and then... I was just walking back to my office from the bathroom when it hit me out of nowhere. My best friend was gone and I was never going to see her again.

I almost fainted in the hallway. I still remember the dizzying way the tiles on the floor seemed to spin as I tried to catch my breath, a crippling panic attack overtaking me. I remember rushing back to the relative privacy of the bathroom before slumping to the floor and sobbing. I remember looking at myself in the mirror, willing myself to 'get it together', but the panic wouldn't abate. Eventually I knew I had to come out of the bathroom, but as soon as I walked into the office I shared with the rest of the injury prevention team, I ran into my boss and I couldn't hide the sheer torment on my face. She asked me if I was okay and I broke. Ugly sobbing in the middle of my office. She gave me the rest of the day off. I think that day was the worst day of my grief - trying to go back to normal, to all the people who, for some reason, didn't seem to have noticed that the world had stopped spinning. I just wanted to scream at them, "Don't you realize that everything is WRONG now??" But my grief was not theirs.

The following day I tried the 'go to work' thing again, and this time I did a little better. I had panic attacks all day, but I managed to contain them. Worse, I worked with a population of at-risk kids for four hours each day at that time, and they didn't even know anything had gone awry in my life. They didn't need any more troubles. Still, I wanted to scream all day, at all the people who couldn't see that the planet had just shifted off its axis, but I didn't. I did cry the second I got into my car to go home. I did call my mom at lunch and wonder aloud if it would ever get better.

After that every day got a little better. Not a lot. I had to be on medication for the crippling panic attacks I was experiencing regularly. Visions of those last days still haunted me every time I closed my eyes. I was somehow unable to remember over 8 years of happy times but blinded by a few days of tragedy. People told me that would start to change... with time. And I wanted to rage against this 'time' thing, this thing that was the only cure for the misery I was in, but that which eluded me. I won't lie. That was a dark time in my life. Little things would remind me of my friend, and still stuck in the grips of mourning, all I could think about were the worst of times. I don't even know how long it took before the good memories started to outweigh the bad, but I know it felt like far too long, and in the eyes of nearly everyone else, it was 'over' and I was supposed to be 'okay' now.

All I wanted to do was scream that I was not okay. That the funeral, the visitation, the things we'd done in memory of my best friend, had not given me this elusive 'closure' thing that was supposed to mark the end. At that time in my life, I did firmly believe that closure was a myth - but I, and the rest of society, simply failed to understand what closure actually meant. It wasn't something that came from a funeral service or from finally having answers, it wasn't a switch that flipped... it was this slow, gradual ascent from the depths of grief until finally, one day, you looked around and realized that you didn't look back and cry so often anymore - that you could finally look back and smile.

Today I feel closure. That doesn't mean I forget Angie, or that I miss her any less, but now the good memories outnumber the bad. Now I see her everywhere - the rainbow on a day when I just can't seem to dry my tears... the whisper in God's ear that she promised to make - to look after my dear borrowed kids... the sight of one of her favorite things in my daily life. And I thank God for having the priviledge to know her.

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

The Year That Almost Didn't Happen

So I haven't done a whole lot of blogging this year. I write when the words come to me, and this year they've been elusive but for a few exceptions. This, however, came to me as soon as the chill of impending winter set in.

Usually, if I sit down to write a ‘year in review’ post, I (a) wait until the ENTIRE year is over, and (b) take for granted all the silly and superficial ups and downs of daily life. Usually, my heart aches for the pieces that were torn away three and a half years ago. This year, my heart is full. This year I’ve been blessed beyond my wildest dreams and yet, it almost didn’t happen. 2015 nearly ended for my family before it even began.

The day we came home to the carbon monoxide detector going off, none of us had ever experienced that sort of situation before, and everything seemed fine, so it would have been all too easy to just brush off the warning – take the batteries out of the detector to stop the annoying alerts and go about life as normal. We almost went to sleep that Sunday night no different from any other... except, if we had done that, we’d have never woken up. We’d all have died from an invisible intruder we should have known was lying in wait.

Instead, that night, we carted three people and five cats to a local hotel, literally minutes from our home, but that night it was a safe haven. I remember sitting in the living room waiting for a friend to bring cat carriers, wondering how much gas I was breathing in just sitting there. I remember reaching into the depths of my bank account to pay for the hotel room that was saving our lives. And most of all, I remember the seriousness and the fear on my family’s faces the following day when they  solemnly told me that none of us would have survived if I hadn’t insisted on going to the hotel that night.

Unfortunately this set off a whole cascade of unfortunate events and I couldn’t possibly count the tears I cried in those first couple days. Then – a miracle. Though every call I made to inquire about heating assistance was fruitless, help came to us in our time of need. Through the unimaginable kindness of what most people would consider near-strangers, people with whom I just happened to share a common interest, the malfunctioning appliance was quickly replaced. Because of another stranger who helped fill my car with firewood, we were kept warm through the week we waited to have the repairs done. People I'd never met before cared for my family as though it were their own, and I will never forget that kindness.

In fact, that’s why 2015 happened.

That’s why the first hug I got from A in three years happened.

It’s why AJ, my sweet (borrowed) little 6 year old with autism, crawled up into my lap and told me I was his best friend.

It’s why I fostered and found homes for four more litters of kittens (Prose and Haiku are HOME for the holidays – adopted together last week!)

It’s why I got to celebrate a Sweet Sixteen with M - who was THREE when I met her!

It’s why I got to help make Christmas magic for a friend who was also struggling.

It’s why I got to go on my first date (yes, at 25 years old, and no, he wasn’t the one, but I enjoyed the rite of passage!)

It’s why I got to take my best friend to Washington DC for her 30^th birthday, fulfilling a lifelong wish for both of us.

It’s why I got to bake Christmas cookies with my friend’s little girl last week.

It’s why every minute of these 365 days happened.

The kindness of near-strangers; that's why those things happened.

And it's why the next 365 days will happen.

Why I will train at the Dojo once again, recapturing the self-confidence karate gave me years ago.

Why we will be there to celebrate a 17^th, 13^th, and 7^th birthday.

Why we will foster several more litters of kittens on their way to forever homes.

Why we will all be here to continue paying it forward.

The ugly, evil parts of the world are all-too-visible and can easily trick us into thinking that the entire world, and everyone in it, are cruel and unforgiving. I, however, have proof that this is not the case. An outpouring of human kindness is the reason I'm here, and this time of year, I can recall all too clearly how things could have been different, so once again, I owe my thanks to people who were there for us last winter. Yes - there are still good ones out there - and to them, I say: Thank you... for 2015.

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.