Sunday, March 14, 2010

The Hidden Epidemic (film)

I got a comment from Bill Brown, the director of The Hidden Epidemic, a film about Post Concussion Syndrome (PCS). I think it's good to have as many resources as possible, because when you have a head injury, it's so hard to figure out which way is up. Bill's film includes some professional athletes who have had PCS (Johnny Damon and Matt Hasselbeck) as well as some regular folk and their stories.

From the Hidden Epidemic site:
  • As many as 30 million concussions in the US annually
  • 20% of the population has the apo lipo protein E-4 gene which makes it more likely that you’ll have long term problems from a head injury/concussion. 
  •  Fifty times more concussions occur outside of organized sports than within organized sports. Most of these concussions are undiagnosed and untreated.   

I was diagnosed with PCS/ mild Traumatic Brain Injury in late July 2009. I had my accident on April 12th. So, in between those two dates I had a doctor that said I would be fine in a few days, just go back to work.. it's nothing. I was driving (not a good idea).  I was carrying on with life like nothing was wrong (but I had a feeling that something was wrong, I just felt like nobody was really taking me seriously).  People did notice some personality changes. Thankfully, I did find a neurologist who is a specialist in regards to PCS. He declared me temporarily disabled (still am).  Even with a disability note, some people didn't know what to do with me.   The problem is... I present well. I look normal. Everything should be fine, right? From the bystander's point of view, a normal person should be able to carry out simple tasks, normal everyday things... but I was having problems.

So, what we mean by a hidden epidemic, is that a lot of us look normal. People that I know with head injuries have commented that I "look good".  We are the walking wounded. We are trying to keep calm and carry on, preserve the status quo.  Some of us don't even know the extent of our injury, just that something is different, we can't quite figure it out, and we don't know how to tell someone what the problem is if we do figure it out. How do you tell someone you couldn't do the laundry today because you are too tired?  How do you tell your teachers that you couldn't do your homework because the numbers don't make sense?

It's especially hard when you are struggling to maintain a sense of normalcy, keep your head above water, and something goes wrong  (did you forget to pay the gas bill? do you remember the passwords for the banking account? can you wrap your head around getting important school documentation done for your child?), our families and friends start thinking that something is up, but maybe not in a 'well, he's injured' way...Maybe you look like you're just being lazy or rebelling against something or just looking to start a fight (mood swings are a force to be reckoned with). 

It's hard to fight two battles with limited energy and resources. Most mild head injury survivors aren't diagnosed...  On one side, you are trying to figure out what is going on with you. The other battle may be with co-workers, loved ones, friends-  trying your hardest to convince them that you have a problem, and no, you are not effing up on purpose. This is a lot of pressure to put on someone who can cry at the drop of a hat.

It's very much like being a duck in water. Calm and normal above the water, but your feet are paddling a mile a minute.

 Wood Duck by juanRubiano on flickr

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