Where I’ve Been

As you may have noticed, I took a prolonged break from my blog.  This could have been for many reasons.  Getting my heart broken (true), getting my medication balanced out after it was clear the one I was on was total crap (true), or turning a new page in life (also true).  But if I’m to be honest, it was for none of those reasons.  No, I stopped writing because I finally had to face myself.  And standing there in that harsh spotlight, I was forced to look at myself (and my illness) with brutal honesty.  And I didn’t like what I saw.

You see, I used to be a pretty awful person that lied and manipulated constantly to get her way.  And I thought that I had put that person in the ground. But when I had my first fullblown manic episode my second semester of college, which led to hospitalization and then a one-way ticket back home, my life sort of turned upside down. And when our lives get turned upside down, we tend to go back to what we know.  What feels safe.  So as much as I hate to admit it, I reverted right back to the very thing I swore I’d never be again. A selfish, lying jackass.

As you can imagine, this all eventually came crashing down on my head.  And in the horrific aftermath, the people most hurt were the people I most cared about.  And one by one, a lot of them walked out of my life, slamming the door in my face for good.  I don’t blame them one bit.

So I stopped writing the blog because, I realized, I was a hypocrite and a liar.  I could blame it on the illness if I wanted but that would just be one more tired excuse that meant absolutely nothing. I did those things. I hurt those people. And I knew what I was doing. I may not have known the extent of devastation that would occur but it was my selfishness that caused it. And so I didn’t want to write the blog anymore because I didn’t want to give people any more reason to think me a hypocrite.

But now I’m back. I don’t know if I’m necessarily a good person now. I know I’m trying to be.  In the words of Tim McGraw: “I’m not as good as I’m gonna get. But I’m better than I used to be.”

My return to my blog is also a decision to get on with my life. It doesn’t mean I don’t regret what I did.  It doesn’t mean I’m not sorry.  But eventually, in order to turn a corner in your life, you have to shut the door on some things. I’ve shut the door on lying and secrecy but I’ve also decided to shut the door on anger and self-loathing. It’s gotten me nowhere. Self-loathing is just another way to be self-absorbed. I’m done romanticizing my disorder and the things I’ve done. I’ll be the first to admit: I screwed up. Royally. But it’s time to let the past be the past and move forward. I can’t change my past mistakes but I can try to make sure I don’t screw up the same way again.

Also, if I believe what I say I believe, then I have to believe that I am forgiven. We, as people, are somewhat narcisstic in nature. We always believe our crimes the most grievous and therefore outside the bounds of grace. But as C.S. Lewis once wrote: “I think that if God forgives us, we must forgive ourselves. Otherwise, it is almost like setting up ourselves as a higher tribunal than Him.” That has been so hard and though I don’t always feel forgiven or feel that I should be, I know that I am. I may not deserve it but the beauty of grace is that it makes life not fair. (I’ve been listening to Relient K.)

I’m on two new medications right now that are, for the most part, miracles in pill form. I’m much more even-keeled these days, I’ve gained nearly 10 pounds since I last wrote, and for the first time in a long time, a normal life is beginning to look possible.  I’m returning to my original school (JBU SPIRIT!) in the fall and I can’t wait.

I apologize for this entry. I realize it’s not of my usual calibre but I just wanted to update people on where I’ve been. The choppy language and evident lack of editing are due to how fast I’m writing. I want to go ahead and post this before I convince myself not to. Better entries are still to come – I hope.

Sometime’s I get tired

charlie brown, football, lucy, peanuts, give up, epic fail, failure, frustration, sports

I mentioned in my last post that I was coming down from a manic episode.  Well, that’s not the whole story.  You see, ever since I had a toxic reaction to jumping my lamictal dose too quickly, I’ve been staying at 50 milligrams.   The problem is I’ve also been feeling like crap.  So I finally went to the doctor to get my levels checked.  One blood test and a week later, I learned that my lamictal levels are much too low.

What does that mean?  Basically, I need to start increasing my dose.  But then there’s the question if I even want to stay on this medication.  Some side effects have been cropping up that make me question whether lamictal is really the drug for me, which leaves me frustrated, because we’re back at square one.

Sometimes, I get tired.

I included the picture of Lucy pulling the football away from Charlie Brown because sometimes I feel like that.  Over and over again, I rush at that football, thinking “Maybe this time I’ll get it right.”  But then the football gets pulled away and the next thing I know, I’m flat on my back feeling foolish and discouraged.  It’s not just about the medication.  It’s about a lot of things.  It’s about learning to live with myself.

I asked Kyle the other night if he thought I was getting better.  When he said yes, I asked him why.  He answered, “Well, I think you’re more aware than you were before.  Like you realize what’s going on when you get manic or depressed.”  The thing is, he’s right.  And I hate that he’s right.  I know that sounds terrible but there really is something to be said about the whole “ignorance is bliss” cliche.  Being aware that my emotions are being screwy because of a disorder doesn’t make my emotions any less screwy.  If anything, it makes it more frustrating.  “If I know why I’m like this, why can’t I just stop being like this?”  If only it were that simple.

I know that, really, my journey is just beginning and I should “hang in there.”  Trust me.  I know this.  I understand that having a diagnosis and a decent psychiatrist is actually significant progress.  I make steps to feel better.  I exercise, spend time with good friends, do things that make me happy. But that doesn’t stop me from getting discouraged sometimes.  Getting tired.

You see, the thing about struggling with mental illness is that the problem isn’t around you.  It’s in you.  And you can’t exactly run away from yourself.  Sometimes I want to, though.  Sometimes I really piss myself off.  As much as I annoy other people, I probably annoy myself more.  That’s why I get tired.  That’s why sometimes I just have to be honest and say that I’m struggling.

Right now, I feel very very tired.

That isn’t who I am

i am, what i am, question mark, confusion, identity crisis

“Isn’t it also that on some fundamental level we find it difficult to understand that other people are human beings in the same way that we are? We idealize them as gods or dismiss them as animals.” 
– John Green, Paper Towns

I was recently told that I’ve been slacking on my blog-writing duties and that I need to write a new entry.  (I’m looking at you, Chuck!)  Honestly, the reason I haven’t written in a while is because I’m finally coming down from a manic episode.  Yep.  The racing thoughts, the scattered emotions, the panic attacks, the sleepless nights.  Fun, fun, fun.  A lot of people are more productive when they’re manic but I can never focus long enough to finish anything.  So a break from writing was necessary.  Sorry, yall.  I’m back.

John Green is one of my favorite authors of all time.  His books contain profound truths, peppered with silliness and sarcasm.   I love them.  One, in particular, is called Paper Towns.  There are a couple different themes to the novel but one is how we view one another.  The above quote is so true, isn’t it?  So often, we put people on a pedestal or dismiss them altogether.  Why is that?

I ask this question because I feel like when you are sick, a lot of times people only see the sickness.  This is particularly true with bipolar disorder.  I try not to mention it when I first meet people because once it’s out there, a lot of people look at me differently.  Or don’t even look at me at all.  They see a disease.  They see crazy.  They see a liability nightmare.  And this is frustrating because there’s so much more to me than that.  By looking at me differently, it’s like they’re saying the other stuff doesn’t matter.

It’s why I often say “I have bipolar disorder” rather than “I’m bipolar.”  Because in the end, bipolar isn’t what I am.  It’s just something I have.  Do you want to know what I am?  I’ll tell you.

I’m a daughter.

I’m a sister.

I’m a girlfriend.

I’m a friend.

I’m a geek.

I’m a college student.

I’m a fan of all things Sci Fi.

I’m a bit of a spaz.

I’m a comic book collector.

I’m a writer.

I’m a dreamer.

I’m very very short.

I’m a vegetarian.

I’m a Christian.

I’m clumsy.

I’m a Hydro-head.

I’m a Dungeons and Dragons dork.

I’m a nerdfighter.

I’m a jokester.

I’m a PK.

I’m an animal lover.

I’m the type of person who will sit down and eat an entire package of cookie dough.

I’m all of these things and so much more.  Because in the end, I think we are more than the sum of our parts.  (Something else I stole from John Green.)  There’s simply more to us than that.  So no one thing should ever be what defines us.  EVER.  

And the people who try to tell you otherwise aren’t worth your time.

Chase the Butterflies

butterfly, morpho butterfly, wings, chasing butterfly, blue butterfly

Yesterday, I chased a butterfly for almost 20 minutes.  Well, I don’t want to say chased, I guess.  I followed slowly, careful not to scare it off, as it flitted from place to place.  I was mesmerized by it’s beauty and grace.  I was excited to be so close to something so remarkable.  Something so…well, pretty.  My backpack weighed a ton, it was hot, and I had a mountain of homework waiting for me when I got back to my apartment, but for that moment, I was all smiles.

It’s amazing how something that small can be such a huge experience.  And yet, in this busy, fast-paced world we live in, it’s easy to miss those moments.  We’re so wrapped up in our schedules and our to-do lists that the best parts of life can wind up neglected and forgotten.

I said I was going to be honest and so I will be.  Things haven’t been sunshine and rainbows lately.  I feel like I’m in over my head, at a new school with all new people, trying to get used to my medication and trying not to give in to the urge to turn tail and run.  It’s been hard.  To top it all off, I can feel myself sliding.  I hate that feeling, when I know the depressive swing is right around the corner.  There’s this desperate searching for a foot hold before falling completely into it.  That frustration as I try to fight it off.

Once, when complaining about just that, a friend of mine said, “Remember, there are still kittens.”  He meant it as a joke, but you know…he has a point.  I worked at an animal shelter this summer and those moments when I got to sit down and play with my favorite kittens, everything felt right.  I felt content – so at peace.  And I guess I just wonder how many of those moments we walk by every day.  How many butterflies do we fail to chase?

It’s not that I think moments like these will solve my problems – or anyone’s for that matter.  However, they do make problems seem a little more bearable, if only for a few minutes.  So next time you see a butterfly?  Go chase it.

Why My Hair is Gone

Yesterday, I chopped all my hair off.  Instead of falling a few inches below my shoulders, it’s now a short pixie cut.  A pretty dramatic change that caused my co-workers to do a double take.  It’s something I’ve been thinking of doing for a long time and a few days ago, in a moment of sheer impulse, I asked Kyle to drive me to the local hair salon.

hydrocephalus, awareness, shaved head, brain surgery, pixie cut

Why is this such a big deal? Well, because to me, my long hair was more than just a hairstyle.  It was a proclamation of victory.  I had my last brain surgery right before I turned 16 and that included getting part of my head shaved.  When you’re a high school girl, this is devastating.  I think I may have cried harder when they did that than when I was told I needed another surgery.

After I was released from the hospital, a friend and amazing woman, Cindy Lampert, managed to salvage what was left of my hair.  She cut it short and covered the bald spot with a well placed part.  It was amazing!  For the next few years, I kept it relatively short, because I was worried that if I needed to have another surgery, I’d have to get part of my head shaved again.  I figured if I kept it short, it wouldn’t be a huge deal.

But around the time I turned 17, I changed my mind.  I wanted my long hair back.  So I started growing it out.  It was my way of saying “Screw you, Hydrocephalus.  I’ll have long hair if I want to.”  So I grew it out until it was well past my shoulders. It even covered up the surgery scar.  I loved it!  ….And hated it.  Long hair is a lot of work.  Especially when it’s thick too.  And I was tired of spending half an hour trying to dry it.

So I decided I had sufficiently made my statement and cut it off again.  Why did I decide to do it this month?  Because it’s Hydrocephalus Awareness Month and I thought doing away with all my hair would be dramatic enough to catch people’s attention and start conversations about Hydrocephalus.  So there you have it.  Why my hair is gone, in a nutshell.

Also, yesterday was the first time I looked in the mirror, saw my surgery scar…and found it beautiful.

September – Hydrocephalus Awareness Month

yellow ribbon, hydrocephalus, awareness, september, spina bifidaThose of you who know me personally (or follow me on Twitter) know that lately, I’ve had a mission – to raise awareness for Hydrocephalus.  This year, I’ve really had to come to terms with my diagnosis and realize that it means certain limitations for me.  I can’t live the life of a typical college student: all-nighters and unhealthy food are out of the question.  Registering with Disability Services and remaining in constant contact with my parents and doctors is a must.  I guess until I was on my own, I didn’t realize how much living with Hydrocephalus (and Bipolar Disorder) truly entailed.

Believe it or not, getting a Twitter is what really helped.  It has allowed me to network with others that are living with the same struggles.  We share our worries and discuss what we’ve learned with each other.  It makes the journey seem a lot less scary, being able to talk it through with others.  What we’ve all realized, though, is how few people actually know what Hydrocephalus is.

(For those of you who don’t know, here’s a quick explanation: Cerebral spinal fluid is works in the brain like oil works in a car.  It keeps everything running along smoothly.  I was born with too much of that fluid and nowhere for it to go.  So my brain basically started to drown in brain grease.  Which is no good.  There are treatments to drain the fluid that work…some times.)

So, in our own ways, we’ve been doing our best to spread the word.  Sarah Renehan from Australia has started “Project Brain Drain,” Tina Daniels in Oklahoma has started “OK Hydro,” and I’ve started this blog – “My Broken Cranium.”  We’ve also used Twitter as a tool, frequently using the hashtag #hydrocephalus as a way to get people’s attention.  These are little things, obviously, but we hope that through our small efforts, we can educate maybe just a handful more people.  It would be worth it, then, wouldn’t it?

Well, this month (September) is Hydrocephalus Awareness Month!  So I feel like stepping up my efforts to spread the word. This post is just one  way of doing that.  I’m asking all my readers to spread the word and help me raise awareness for Hydrocephalus.  How can you do that?  Here are some ideas:

1) Have a Twitter?  Use the hashtag #hydrocephalus .

2) Wear a Hydrocephalus Awareness Ribbon.  Start some conversations!

3) Donate money to a Hydrocephalus Walk in your area.

4) Fundraise!  Hold bake sales, make and sell crafts, mow lawns, etc etc…

5) Have a blog?  Write an entry about Hydrocephalus.  There are some great stories to feature!

6) Add it to the prayer list at your church.

7) Hug someone with Hydrocephalus!  It’ll make their day.

I’m sure there are other ideas out there so get creative!

A lot of people ask me why it’s so important.  Well, frankly, Hydrocephalus is a rare disease (less than 1% of the population has it) and so it hasn’t really gained a whole lot of attention.  But finding a cure is still important!  As of right now, there is no cure and even the treatments available aren’t ideal.  A person with a VP shunt can have upwards of a dozen shunt revisions in their life.  Not to mention the risk of an infection attacking the shunt.  ETVs are a little more reliable but even they can heal over and stop working.  A real cure needs to be found.  For Sarah.  For Tina.  For me.  For everyone living with Hydrocephalus.