Wednesday, March 6, 2013

Raising Brain Injury Awareness

March is Brain Injury Awareness Month.

Why do YOU need to know about Brain Injury? Because the doctors that you and your loved ones go to don't. That's right. They don't. Brain injury is a slippery little fish to catch and there are no medical cures, so medicine has paid little attention.

When I acquired a brain injury, my doctor of 13 years looked alarmed. "You don't look good, go home and rest," was all I heard. I could do nothing else, so rest I did. After months of rest, I could still barely open my eyes or walk. Now my doctor said "You have Post Concussive Syndrom, it is a Mild brain injury". End of conversation.

I thought "mild" meant no big deal, I'll be better in another week. "Mild" brain injury simply means you were not unconscious for over an hour. It has nothing to do with the severity of the symptoms. It is a HUGE misnomer. I think my doctor thought Mild meant mild too.

The neurologist looked at me and didn't get it either. "You are just anxious, that's why you can only think of 5 things that start with "f" in one minute." What??!!  This guy had no idea how messed up I was. End of conversation.

No resources, no help, no advice, no referrals, no rehab. Brain injury survivors are sent out on their own to figure it out....and they can't.

I have spent three years in search of medical professionals who understand. So I can tell you, they are few and far between. A second neurologist was at least honest, "If I can't operate on it, there isn't anything I can do, so I don't know much about brain injury. I have nothing to offer you." End of conversation.

My story is typical among brain injury survivors. I hear it more often than not. Doctors don't understand it. After all, we "look normal". You can't see it. What makes this fish more slippery is the survivor may not think they have a brain injury either. The brain is the instrument that assesses our well-being, and the assessment tool is broken. Even though we can't do simple things, we often think we are fine. It takes months or years for the survivor to understand their own limitations. That IS one of the symptoms.

I don't expect doctors to be super heroes and know everything about eveything. But it sure would be helpful if they knew enough to say "The are resources. There is Rehab right here in our hospital. There are support groups. You are not alone. There is help. Here is a brochure."

YOU may be the one to determine whether someone you love has a brain injury. Do not rely on your doctor to know. You are the best advocate for your family members. That is why we have Brain Injury Awareness Month.

Become aware here.