Paul, Alice and the Mad Hatter

Original post January 27, 2013

This is the thing with brain injury, it's like going down the rabbit hole with Alice, treacherous and surprising at every turn. On Friday I sat writing a letter to Paul's daughter. The last time I saw her was at my mother's funeral 17 years ago. Since then she and I have aged and perhaps matured too. Her father, on the other hand, remains something of a teenager psychologically, defying those who would be his caregivers.

So, on Friday, as I finished the letter, my phone rang. The speech  pathologist called to me more information in 5 minutes than I've been able to acquire in three weeks. Here's the deal, Paul has suffered a trauma to the trachea. The tracheotomy site has been closed up since 1980, I think. But when he choked on New Year's Day, his trachea became traumatized and has yet to reset itself in order for Paul to swallow properly. They continue to order no food and drink, although he gets nutrition through a tube inserted in his stomach. But the speech pathologist is helping Paul to exercise the throat and tongue muscles in order to send messages to his damaged brain so he may begin swallowing properly. 

On Monday they will perform a swallow test with Paul. They have another Ears, Nose, and Throat consult ordered for the end of the week. If nothing is found, there will be more consults, gastro, neuro, until we can solve the issue. 

Paul's brain damage was so severe that no one knows the far-reaching effects of it. Could it be that his brain cannot train his throat to accept food? Could he be unable to send nerve transmissions to that part of his body that begins the digestion process? Alice and I are looking for a Chessire Cat to help us figure this out, or at the very least a Mad Hatter.  

The speech pathologist had more to report, which goes to the thing I have to keep reminding myself of, that Paul is like a 14 year old who wants to get in trouble. . Someone came to get Paul and took him for a ride off the floor of his care facility and bought him iced tea. Harmless, it would seem, except that if Paul aspirated while in the care of this man, it would be his cross to bear, so to speak. 

Now I'm finding out that Paul has a couple groups of friends, one from the Vineyard Church, the other from a 12-step program he belongs to. I'm learning that these friends are very faithful to a brother I often wanted to disassociate with when I was a kid and beyond. It breathes a new life into a man I saw as only a disability and an anchor around my neck. 

In my visit with Paul yesterday, I shook my finger at him. I said, "I'm not your mother, and I'm not signed on to this the same way a mother would be. So, Paul, you need to pay attention to what the nurses and therapists tell you to do. You are not allowed to drink anything, not even iced tea. If you don't want to do what you've been told, then why should I help you?"

I know it sounds harsh, but if I allow him to rope me in to behaving like his mother, then I'll get aggravated like I did yesterday when he had a smirk on his face. I've seen that smirk before, when Paul was in eighth grade and Sister James Marie sent him into the hallway for punishment because he couldn't behave. 

On we go, sliding and turning along the dark pathway of brain injury. More to follow.