Wednesday, September 9, 2009

It's Not Brain Surgery... Or Is It?

Did you know that every year in the United States, 1.4 million people sustain a traumatic brain injury (TBI)? Of those people, 50,000 die, 235,000 are hospitalized, and 1.1 million are treated and released from an emergency department. That's not even counting the folks who never seek treatment for TBI, usually because they don't realize they've had a serious injury (even Natasha Richardson thought she just had a headache, and there are countless cases like hers).

It should be noted that technically, traumatic brain injury is "a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain" (this definition and previously mentioned statistics are all taken from the CDC website). However, many people in the community use the term loosely to also include stroke, anneurysm, and arteriovenous malformation (AVM) victims and survivors, although this portion of the brain-injured community is not included in the CDC's statistics on TBI. I will be using TBI as I've just described, loosely, because all survivors will be faced with similar obstacles - no matter how they arrived at that point.

Yes, it seems that the brain-injured community is much larger than most of us think. For me, it was a completely shocking revelation to see TBI's effect on my husband and all of the patients with whom he had rehab; my complete lack of awareness of this population and their challenges were embarrassing. For those of you who don't know, Wesley (my husband), was diagnosed with an AVM in June of 2008 and underwent two brain surgeries, which, initially, left him completely disabled.

Imagine feeling great today and waking up tomorrow unable to speak, walk, brush your teeth, feed yourself, or even use the bathroom. What would it be like to not even have a concept of what an alphabet or letters are, let alone recite them? Now, imagine that as the weeks go by, you begin to recover memories of your past. Eventually you realize that you were once a fully functioning adult with a rewarding life and loving family, and now you can't do any of the things you used to. You're completely dependent... and you know it. Can you see yourself here? This is what my husband, and millions of other survivors of TBI, experienced.

The heartbreak of watching people endure a terrible ordeal such as this literally causes me pain. I remember that when I used to pick Wes up from outpatient rehab in the afternoons, sometimes I'd have to go inside to sign a form, talk to a case manager, and the like; nine times out of ten, I left nearly in tears as I imagined what these other patients' stories might be. I constantly heard stories of the struggles patients had, both during rehab and after; one of the most recurring stories involved various patients being treated horribly by people outside their close-knit communities - the general public - because they were perceived as "slow" or "stupid" (their words, not mine). Why do we presume that a person has a "normal life" if their injuries or challenges are not immediately visible? I think that one way you can tell if you are treating people the way you should be is to imagine if you found out tomorrow that they'd had a stroke or other brain injury that left them unable to do or understand certain things. Would you feel guilty about something you said to or thought about them?

This discovery and acute awareness of the brain-injured community made me want to do something. Anything. I wanted to help; I just wasn't sure how to do it (after all, I was nine weeks pregnant when Wes went into the hospital, and suddenly thereafter I became our family's sole provider). Luckily, an opportunity has presented itself to Wes and me. The Oklahoma Chapter of the Brain Injury Association is relocating from Oklahoma City to Tulsa, and both of us were nominated to serve on the board. I'm so happy and proud to say, this morning I was notified that our nominations were accepted.

I feel like this is my chance to contribute; to help others the way Wesley and I were helped along the way by incredibly compassionate, wonderful, complete strangers. My goals for serving in this position are to raise awareness of this population of people and help the general public understand some of the challenges and hardships they face on a daily or even hourly basis. I'm so very excited to have this opportunity; it is one I won't take lightly. Needless to say, Wesley is thrilled, as well. He has a special ability to really connect with TBI patients and their families, helping them to cope with what has happened to them.

As Wes would say, "Be good to your brain."

Bookmark and Share


3 comments:

  1. You go girl!!! It is refreshing to read a blog that makes people want to help.....Be good to your brain......I like it..

    ReplyDelete
  2. I am so glad that you are using your experiences to help others. I worked at Oklahoma NeuroSpecialty (an acquired brain injury rehabilitation hospital in Tulsa) for about a year and a half as a speech pathologist. There is such a huge population affected by brain injury, but, to me, it has always seemed overlooked by the general public, maybe due to fear or maybe due to ignorance.

    ReplyDelete
  3. Jennifer, I'm familiar with OK Neuro... that's where Wes did his rehab!! Small world.

    ReplyDelete