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.

Endometriosis Awareness AMA

So in observance of Endometriosis Awareness Month (March), I'd like to use this post as a little bit of a Q and A. Anything you've ever wanted to ask but you felt like it was prying, too personal, or a 'silly' question? There are no silly questions (although when I'm involved there are silly answers!) So here's my sort of AMA. Ask me anything about endometriosis, about life with endo, anything along those lines! You can do it here (anonymously or not, your choice) or on my facebook/twitter if you happen to see this link there, and I'll answer as best I can. I just want to help spread awareness about a misunderstood disease that affects so very many women in horrible, life-altering ways.