Monday, November 26, 2012

Who do you think I am?

Dear World:

This is not a letter of complaint.  It is a letter which I hope will help you understand why I and countless others might act the way we do.  I am not talking about underlying philosophical reasons but health related matters, the invisible disabilities that get in the way of everyday life and relationships. 

I want to start by asking how much you know about tinnitus.  Tinnitus is not an uncommon condition.  It's usually manifested by ringing or tonal sounds in the ear, sometimes one ear, sometimes both.  The noise can switch from one ear to another and then back to both, creating an interesting yet unsettling experience.  Tinnitus can cause headaches, dizziness, and other related symptoms.  So what I want to know is, what do you think it's like to have constant, daily ringing in both ears?  What do you think it's like to have the tone change once in awhile, or move, as if you're listening to two speakers from the same stereo but one speaker at a time?  Add allergies, sinus pressure, loud or high pitches noises into the mix and what you get, in case you cannot imagine, is a constant sense of noise that cannot be turned off.  That's my world, and it began after I was raped and assaulted.  I've got permanent nerve damage that affects my hearing, sound sensitivity and perception.

Now let's add some ADHD.  If you don't know anything about ADHD, you can Google it easily, but I am going to keep it brief by describing it as another kind of noise in my head--thoughts, images, and most of all, associations.  I see one thing and it reminds me of another which reminds me of another which reminds me of another.  This is great if you want to write a poem or story because when everything is this connected, you can get some powerful metaphors and imagery.  The problem is, you can't shut it off easily or at all.  There is medication, but the medication is not perfect. 

Physically, I tend to do things like move a lot when most people are sitting still.  It's not always obvious--I bounce my leg, curl my toes, rotate my feet, twirl my hair or touch my hands.  I can become quite impulsive, particularly when I speak, saying things that make people raise their eyebrows, question me or become angry.  Sometimes I'm bad at reading social cues or interpreting body language.  I also tend to be a workaholic.  When I get into a project and am focused, I can become hyper-focused, which is strange, I know.  All I can say is, I'm a work in progress and that I am not the only one in my family who has ADHD.  It's hereditary. 

Move on to depression compounded by PTSD and PMS.  It's pretty hard to restructure thoughts when one bad thought gets thrown into the ADHD cycle, leading from one negative thought to another, connections between seeing something that reminds you of something or someone bad or scary.  Conversely, it can work the other way, resulting in a positive loop, but the disconnected neurons and environment often get me into a serious funk.  When it gets really bad, I hide out, trying to shut off the noise and the sadness. My depressed brain just wants to cry and numb out, doesn't want to do a damn thing, isn't interested in anything.  But my ADHD brain says, "Go do something.  You're bored."  It's hard to say which brain will win.  Usually I end up having a funk then getting back into something (like writing, for example).  The ADHD brain might take over and plunk me back into being a workaholic which leads to burnout and guess what?  Depression.

Now let's add anxiety.  All of the above can produce and/or increase anxiety.  I'm anxious because I don't do enough.  I'm anxious because I do too much.  I'm anxious because I don't think I am doing things correctly.  I'm anxious because I'm anxious!   

A lot of times, I can pass as good humored, friendly, extroverted and "normal" or just a little eccentric.  I don't mind being perceived as eccentric.  In fact, I like it.  I enjoy being able to express myself in an out-of-the-box way because I have never fit into any box, nor do I want to.  But too many times, I've been misjudged.  People make assumptions about me because I've become good at faking it when I need to.  I smile when I am miserable or frightened.  I bite the inside of my mouth until it bleeds because I don't want people to see me cry.  I try to focus on something neutral, like maybe the speck on a count top or a flickering light.  See that's the problem with invisible disabilities.  When I'm out of sorts, it's easy for people to say, "She's an asshole," or "She's flighty" or "She should just keep her mouth shut," etc. when "she" doesn't appear to be anything but a normal person who, on a bad day, is perceived as acting out.

Why am I blogging about this?  Well first of all, because like most people, I want to be understood.  I don't want to be pitied or given special attention just because my brain has some faulty wiring.  But I would like people to know there's a reason behind everything--not an excuse, but a reason and a valid one.

The thing that pisses me off the most is when people make assumptions and talk about me behind my back instead of coming to me and asking directly, "Is something wrong?  Are you having medical problems?"  But they don't.  They gossip.  They sometimes say mean things.  And the bullies have a field day. Bullies can drum you right out of a job or a school, which has happened to me.  And guess what?  There's no proof.  What am I supposed to say?  "Excuse me, human resources manager, but these people are talking about me really loudly so I can hear and they are being mean when they do it."  Or how about this one?  "Someone is leaving things on my desk or sending me emails just to annoy me or make fun of me."  So then, in order to be specific about my disabilities so I can get acommodations, I provide proof of my conditions.  The verdict?  "This person is crazy and paranoid."  So my work quality drops and I'm absent more, which means the stress gets higher and higher and soon, it becomes obvious that I can either quit (which is what the bullies want me to do) or get fired (which HR doesn't want because then they may have to pay unemployment or the company might be sued).

Here's the point, folks.  Don't judge.  Be kind as often as you can.  Offer solutions.  Offer support.  Stop being so afraid of people who are different, people who might look scary or people whom you don't understand.  Do these things not only because someone might have a disability, but because no one really knows what lies beneath a person's exterior.

Now listen to this.  I've got all these things wrong with my body, and I've had some bad things happen in my life.  I was raped.  Yet for two years, I have taught in a jail full of sex offenders.  Why?  Because I could forgive my rapist and understand how people come to be who and where they are.  There's more to these people than the crime they committed. 

I wrote a book based on the Civil War, one that also represents my war with PTSD, the one I went through after being raped and assaulted.  That book ends in a victory poem.  I wrote a children's book based on themes of forgiveness, coexisting, and protecting our natural world because I've experienced all of these challenges that come along with having to grow.  And I wrote a novel based on predatory lending, something I've lived with and continue to live with.

Along the way, I've also pissed off politicians and hate groups by stating what I believe.  Yes, I see that as a kind of bittersweet victory.  It's pretty hard to get these people's attention, never mind get a reaction, which was sweet.  But through this blog and my other online interactions, they found my weaknesses and used my disabilities against me.  Were the results painful?  You bet.  Were there times I thought, "They are going to kill me?"  Yes.  Were there times when depression, anxiety, and PTSD in particular made these days some of my worst?  Absolutely.  But guess what? 

I'm still sitting here blogging and trying to make everyone understand that no one is worthless, no life is unworthy of being nurtured and no one deserves to be treated as less than human.

I've had a lot of help along the way, a lot of angels, many of whom I don't even know.  I am forever grateful for them and for my healthy, beautiful family and friends who care. 

See, some people do nice things just because they are good people who help others without expecting anything in return.  I try to be like that, and believe me, it's often misinterpreted (as well as difficult because I'm not always patient or nice).  Our society is suspicious of people who are unselfishly kind and sincere.  We are suspicious of people in general, which is why we with invisibly disabilities make easier targets for the ignorant and mean spirited.

Maybe you have learned something from reading this letter, maybe not. Probably you haven't even bothered to read it, don't know it exists or don't care.  But I've written it, and that's important to me.  I'm not ashamed to say, "My body is kind of screwed up."  And I am certainly not too proud to ask you to give people like me a second thought.  There's a lot more of us out there than you might think.

Sincerely,
Katherine Mercurio Gotthardt     
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