It's a lot like going to a jail, going to see my son. My wife and I, and Jon's half-sister drive two hours down country roads in order to have some relaxing moments before entering the world of traumatic brain injury. I showed them a historical Dutch barn that had been reconstructed and we took some pictures. We looked for interesting houses in some of the litle hamlets, chased an interesting bus to take a picture of it and then discovered that it was carrying a bunch of crazy religous zealots who once tried to convert Jess. Lots of things happen before you pull into the driveway and walk thru the automatic doors at Lake Katrine.
You have to sign a book when you arrive and there are two of them at the desk. There's always some confusion because they label them strangely, so that the book that seems to be for visiting families is actually the one for more commmercial visitors. A TBI survivor is almost always there to greet you and sullen, damaged individuals stare at you from their chairs until they recognize your face from before and then they wave. It always makes me feel better somehow when I see the wave. It means their memories work, their vision works, they can control their hands and arms. They know what to do when they see someone they know. Funny, isn't it, those things we never think much about when we live in the world or normal functioning brains.
You also have to sign a book once they let you in to the vent unit, and I often can't recall which desk has the sign in book. It all serves to make you feel like you are entering a prison, which of course in a way you are, but it's mostly to protect the residents from hurting themselves or being hurt by people from outside who would take advantage of them.
Jon was not having a good day. His forehead was hot and sweaty, his lungs were rattling, the sheets were damp and his skin was pasty and broken out. Another infection. Each one can take his life and I noticed the two IV bags hanging at his bed, empty. He'd been sick for a few days, but none of the weekend staff could tell me with what or for how long he had been infected. UTI, pneumonia? Doesn't matter, they both can kill and they are both treated the same way. I've been thru this so many times but it always scares me. He looked almost as bad as when he was down in Scottsdale, but still, much better than those terible days. No bloody wounds gaping and smeared with shit. No piss stained sheets or gum smacking, unconcerned nurses. He was being taken care of.
The room mate, Charlie, was being visited by his wife and fat old dog, Skipper. Skipper likes to sneak over and give Jon a kiss and wait near his twisted hand for a stroking. They tell me Jon gets to see the dog often and between this dog and the therapy dogs Jon gets a visit every day. I wish it would be Jon's dog, but Jon's dog was taken by a friend and it seems isn't coming back. Funny how people feel okay about stealing things from a man in a coma. Even his dog. Skipper is a kindly old dog who shows me clearly that she knows Jon is sick, but reassures me that she is there for him. Jon likes to have a dog nearby and smiles his twisted litle half-smile and he struggles to breathe.
I tell Jon about how we're trying to find a facility close to home, how we're arranging to fix the leaking roof and set up his old bedroom so he can come visit. He smiles at me a bit, with a film over his eyes, but the fever seems to be breaking and his skin feels cooler. I stroke his dampened hair, wash off his face and we turn the pillow over to a dry side. HIs hands are tighter than before and haven't seen a splint in months. they may have lost them, the aide says, as she hasn't seen him wearing one in a long time. I told her that the place has thrown in the towel on Jon, given up, no longer trying. She seems uncomfortable, but doesn't bother to contradict me. It's the truth.
She tell me about how she was telling Jon some funny story about Frank Zappa's kids and how he smiled at her. She told the other nurses that Jon reacted to a story, but no one believed her. the woman with the dog tells me he responds to the dog, looking at her and smiling when he has his hand on the dog's head. No one believes her, either. They don't believe me, they don't believe the visitors, they don't believe the aides or the nurses...anyone who says Jon is responsive is dismissed as imagining things. Otherwise they have to deal with the fact that he is locked in and understands what's going on around him, and that is too depressing a concept so they dismiss the stories. To them he's just a corpse waiting for the grave, a body filling a bed until he can find his way into the ground. Somehow that's easier for them than the idea that he may be someone who requires more care, not less, who requires equipment the government won't provide, nursing they don't have enough staff for, and more stimulation than he gets. Better accept defeat than accept that nobody with the power to heal, to help, gives a damn.
I tell Jon it's time to go, to drive back thru the rain and darkness to our little soggy home and he frowns and bites his lower lip. He pouts like he did as a child and closes his eyes, refusing to look at me again. My wife, his step-mother, bends down to say goodbye and give him a kiss. He looks up at her. Not responsive means he can't understand that we're leaving, so those appropriate reactions have to be labeled as "reflex", as if sorow at being left behind is a reflex, not an honest reaction. Well, maybe it is. Everybody hears about how coma patients can laugh and look and otherwise seem so aware, when they're not. But then a smaller group has read the studies that say 43% of the people diagnosed as "vegetative" are later proven to be "locked in" and get better and sometimes even walk and speak.
What to do first? Find a facility with beds free and fill in an application to move Jon in, except none have available beds. Fill in the applications anyway. Visit places and get to know the staff, except the staff is too busy to stop and chat and I don't want to get in their way. Research, search and more research, trying not to get panicked, trying to shut out the sight of the boy sweating, wheezing, maybe dying. Take it one step at a time, except there are no steps for Jon, no clear paths to some form of better days.
He was scared last night because of the problems he had breathing. I could feel the pain from the pneumonia in his chest, feel the rattle in his lungs. I could feel how he wanted to be free, to leave that bed. Our connection doesn't usually bring me those feelings except when he's pretty sick, and then I get the "pleasure" of sharing his feelings. I mentally stroke his head, tell him I'm somehow nearby and things are getting better. I know that if I call the place and ask about his fever they will tell me it's back, but no one will be able to believe I knew because he told me. Nobody will believe that a shaman father can join his shaman son on a plane of existence closed to most people. Nobody will even want to hear that spirits can walk and sick people can leave their tattered bodies to travel around. It doesn't matter what they believe as far as I am concerned. Their faith in their science and in their drugs is unshakable and my job is not to convert people to a piritual life, my job is to make sure the people of their faith don't kill my son through their ignorance.
I'm really tired and the meds are kicking in. My pain is fading away to a dull ache and my eyes are heavy. Jon is probably waking up to his daily routine. More meds, more cursory massage, more people calling him by another's name, ignoring the signs in the room asking that they call him "JON". I have to organize my thoughts and start looking up addresses and phone numbers. Time to Google around looking for a new bed for the boy to sleep in.