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.

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

Those 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.