something is wrong with him

"Florence, this is my husband, Karl. Karl, this is Florence. She was at game night."

"Oh, yes," Florence says, "I recognize you."

Unfortunately, that's what I thought. At game night at our church, I told a group of women that my husband had a degenerative brain injury. I showed them pictures of my kids. Florence said she thought she knew my husband.

"He brings the kids downstairs for class? You can kind of tell about him?" Florence said.

Yes, apparently now you can kind of tell that Karl has some cognitive impairments. Until now, I found the phrase "he seems normal" painful. It was painful to have to defend Karl by explaining that he has brain damage. Only now that I see the phrase "he seems normal" slipping away, do I realize what the alternative is. The alternative to "he seems normal" is "something is wrong with him."

Today Karl had an appointment with neuro-psych. He was again told that concussions can't cause long term damage. I did not go to the doctor's appointment and I regret it now. Karl will not argue with doctors when they give outdated information. He just rolls his eyes. I will fight. I also regret not finishing the TBI for Dummies handout yet. I am going to make it a priority this weekend.

At his appointment he was given referrals for chiropractic and acupuncture, both of whom will contact him, and a doctor to give him knee braces, whom he must contact. He was also given a referral to speech pathology, who will presumably contact him, he was a little hazy on that. I am confused by this last referral. Speech pathology is the department that handles TBI. If he doesn't have TBI, just "depression" or "anxiety," then why are they sending him to the department that handles TBI?

Karl also brought me home a metaphorical gold star from the VA. Another one. Routinely when he talks to doctors, he comes home and tells me the doctors are happy with what we're doing. Today the neuro-psychologist was happy about our ways of managing Karl's pain. Instead of narcotics, he uses medical marijuana. However, he is still getting a referral for knee braces, chiropractic and acupuncture... because he is still in constant pain. I don't think narcotics would help, plus they bring their own side effects and pitfalls. Hopefully chiropractic, acupuncture and knee braces will help.

I am glad that we're moving forward with pain management. I am furious that we're moving backwards with brain health. I would say we're at a standstill, but it's more like everyone else is standing still watching Karl careen wildly down a hill in a car with no brakes. I have tons of metaphors for the absolute inaction of everyone else while Karl is sliding downhill. I am the one trying to flag down the train or get a trampoline under a window of a burning building he is trapped inside or find an extra lifeboat. I am the one trying to save Karl while all the doctors stand around slack-jawed, unaware that there is a train heading towards a cliff or a building on fire or a ship sinking. Sometimes I feel like I must be going crazy because I am the only one who sees the crashing train, burning building, sinking ship. Maybe they do not exist.

I am a five time college drop out. I have left community colleges for good reasons and I have left notable universities on a whim. I have finished the semester before leaving and I have withdrawn from all my classes after a week or half the semester. Once I quit Baylor University because I wanted to enjoy my summer. Once I quit McLennan Community College because my roommates moved out and left me in a lurch and I needed to get a job to pay my bills. Once I quit the University of Louisiana, Lafayette to move to California on a greyhound bus for fun. Once I quit McLennan Community College because I was pregnant. Last year I quit Austin Community College because there were no classes that I liked that would work with the time I had available.

I don't think a college education is necessarily an indication that people are smarter than me. Some people with degrees are smarter than me and some are not. That is not the point. The point is, if a five time college dropout can figure out, by googling, that concussions can be cumulative and that a single concussion can cause permanent degenerative brain damage, why can't doctors whose area of expertise is the brain? I am discouraged by the repeated suggestion that I know best and that I am doing better than a doctor at treating my husband. I am furious that a five time college drop out with a laptop is more knowledgeable than someone who spent over a decade in college to become a brain doctor. Those doctors should be furious too. They should be furious that their education left them unequipped to help people who desperately need their help.

And they should learn how to google.