A Disease?

The Brain Injury Association of America (BIAA) is a wonderful organization working to help folks become aware of the 1.6 million traumatic brain injuries that occur every year. I’ve been involved with the statewide organizations in both Georgia and North Carolina. There web site is http://biausa.org and I encourage you to check it out . Although I agree with most of their actions, I strongly oppose their current push to view brain injury as a disease. You can find a position paper on the site called “Conceptualizing Brain Injury as a Chronic Disease.” I understand that classifying it as a disease may allow brain injury survivors to tap more funding sources but this is not the way to go. I don’t have a disease.

Due to my TBI, I get frequent migraines. In the beginning I tried numerous preventives but they either didn’t work or made me sleepy. I also tried dozens of medicines that helped stop the headache after it occurred. This went on for several years. I’d spend the day in a darkened room laying in bed not able to function. After several years of trying various meds, I found a neurologist who tried an unconventional combination that worked. The preventive made me sleepy but after trying several different ways of taking it, I discovered I could take the bulk of it at night when I had to sleep anyway.

This past year, I discovered the preventive meds were doing things to my body that I didn’t like. One med raised my heart rate and the other caused sleepiness. So after over ten years of taking this combination of meds, I’m trying to cut them out by using acupuncture. After stopping one med, my heart rate is down to normal but I’m still working on cutting out the other one. I’m doing this under a doctor’s care just to be sure since the meds are pretty powerful. As a result, I don’t have to take my noon day nap which I’ve taken for over ten years! I still have cognitive overload and overstimulation issues but it’s nice not having to take my nap every day.

In the paper mentioned above the authors wrote, “Historically, individuals living with a brain injury have been referred to as brain injury survivors. No one knows how that term came to be used in this situation.” Maybe no one knows how this term came to be used but I am definitely a survivor. Every day, I have to figure out how to live when I get overwhelmed with the stimulation around me. Every day, I must figure out how to get somewhere when I have no sense of direction. Every day, I struggle with double vision caused from the accident. Every single day, I must survive these challenges. I, along with the millions of others who have sustained a brain injury, must live in a world that is not made for us. We are survivors and I challenge anyone who does not have a brain injury to say this is not so!

I mentioned before that I’m using The Daily Reader for Contemplative Living compiled by S. Stephanie Iachetta each day. Today she suggests reflecting on a passage in Mark which begins…”the reign of God is near.” (She uses “kingdom” but I prefer “reign of God.”) I worked on this post earlier today and became very angry when I wrote about the ideas suggested by BIAA. I went to the Y to swim my laps with the hope I would get some of this anger out. I’ve been trying to think about the reflection passage every day but I sometimes have trouble remembering it. I write it on a little piece of paper and put it in my pocket so I may read it throughout the day. There isn’t a pocket in my bathing suit so I tried to remember it rhythmically as I swam. I got “the reign of God” part right but all I could think of next was, “is here.” I thought to myself, “That can’t be right! The reign of God isn’t here. Oh well.” It fit pretty well with my rhythm so I said “the reign of God is here” as I swam across the pool.

Something happened to me internally even though I knew what I was saying wasn’t right. “The reign of God is here” means there are no brain injury survivors. “The reign of God is here” means I’ll never get lost again. “The reign of God is here” means I have no double vision. As I swam across the pool, I was filled with hope for the future. I left the Y with a renewed faith in God. Then I checked my slip of paper in my pocket and realized the passage was “The reign of God is near.” I still have double vision and I still get overstimulated when I go into a room. But now I feel a renewed sense of God’s courage, energy and comfort.

I’m very concerned about BIAA’s stance. Our world is so prescription oriented. I’m fearful that BIAA is trying to get money from drug companies by calling brain injury a disease. Acupuncture has allowed me to cut back on my meds and now the side effects of my meds are disappearing. (Of course, my health insurance doesn’t pay for this. Instead, they’ll pay for the doctor’s visits and the meds.) I encourage BIAA to continue it’s advocacy but I believe this current path is a dangerous one. I believe there are other ways to bring the reign of God closer. I pray this will be so.

I encourage you to comment if you see fit. Click on the comments button and place to type your comment will appear. Following that it will ask you to select how you want to post, choose anonymous. Click yes when it asks you to preview. After that you can post it. If you’d rather respond to me directly contact tamara@indylink.org I’m working on making this easier!

3 thoughts on “A Disease?

  1. The disease concept is very troubling to me. Historically the medical profession has used this to regain control over a population. I applaud BIAA attempts to gain respect among funding sources, but these types of partnerships create a slippery slope toward reducing the immense power of alternative non-medical-model approaches.

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