Tuesday, January 3, 2017


Could brain injury have sparked soldier's rampage in Afghanistan?

"The U.S. Army staff sergeant who allegedly murdered 16 Afghan civilians in a dead-of-night spasm of shooting, ....is reported to have suffered a traumatic brain injury during a deployment to Iraq in 2010.

Research on traumatic brain injury has established a clear link between brain trauma and irritable, aggressive behavior that can be explosive, often without apparent warning or provocation. Sometimes, brain injury magnifies a victim's longstanding tendency toward irritability, depression or hostility. Some brain traumas bring personality changes in their wake, causing even laid-back types to become irascible and impatient." (LA Times 3/13/12)

It is worth noting that brain injury, especially in the front of the head/prefrontal cortex does cause a person to lose their sense of inhibition. Modern medicine now has the ability to save lives when people sustain a traumatic brain injury, but we need to put as much time and money and assistance into the other side of the recovery, and not expect TBI folks to go about their lives like they did before. 

Paul Williams, in his office in Encinitas. Two months after his brain injury and still in outpatient rehab

My experience with my husbands injury was such that they sent him home after two months of care, one month of ICU, then another month of In-Hospital-Rehab. Then one day the doctor announced to me, "good news, we will be sending your husband home with you tomorrow". 

I didn't know what to say. I was stunned.  Just the day before, Paul had screamed at a nurse and stayed up all night wandering the halls and then he failed his "making brownies and cooking strategies" test. A week before he had jumped out of bed, had a blood pressure drop, keeled over backwards and was wheeled out to the emergency room again. His face was still black and blue from his head slamming on the linoleum floor.

I didn't know the first thing about taking care of a person recovering from a brain injury. The thought of the responsiblity was too much. Looking at the doctor my turned pale. I could barely take care of myself, what were the doctors thinking...no I knew what they were thinking "we can't justify to his health insurance company why he has to be here longer".  

I asked the doctor for more time. He gave me 2 days and then we brought him home. I'd also asked for Paul to see a neurologist to see what he was capable of on his own,... at this time no one had asked to take his drivers liscense away or even suspend it. And Paul thought he was ready to get right back into his routine. For a while, I had to be clever about hiding car keys. 

The car thing stunned me. How could the government not require a driving test from someone who'd had 5 centimeters of their brain removed. Everyone assumed he was good to go

A friend of a friend was an eye doctor for our health provider. At a party I shared with him I was really concerned about what kind of blind spots Paul might have and whether we could find a way to suspend his liscense at least until we knew if he was a cogent thinker again. This doctor friend checked Paul's eyes and said, "he's got a big blind spot on his right side but that just means he'll have to turn his head around to see what's over there. Otherwise, he's good to go!" 

That was it. Everyone agreed, he was good to go. Other than a brain surgery buzz cut hair-do he looked like himself. He looked okay. Except, I could see the difference. Like: he wouldn't quite look you in the eye when he talked to you/he was sort of in another hazy-world. After the sun went down he would talk incoherently-this is called sundowning. And, he was a terrible driver-sometimes thinking an off ramp was just an extension of the right lane.

Some of these symptoms changed or went away in the six months post injury. I was told the first six months was when most of the recovery would occur, and that was mostly true. Because Paul had such a high IQ before the injury he faired better than most. His brain surgeon had even joked that with luck and with Paul's 180 IQ he could 'afford to lose a few brain cells and still be a genius'. And that 'folks with high IQ's often fair better after a brain injury'.

The nurses told me "whatever personality traits he had before, he will still have, but they may be played out more dramatically, more emphasized". This advice turned out to be mostly true. 

So in Paul's case he was quick to anger, was very impatient and liked to lecture. That looked like this: yelling at the security check person at the airport (pre 911) and getting his luggage examined, pushing a hefty security guard at a Los Lobos concert and getting collared and thrown out, talking non-stop with breathless run-on sentences during sharing time at a Buddhist meditation retreat, yelling at a meditation "expert" and calling the guy an asshole (the guy was full of himself and i rather liked this one), or wearing his bicycle helmet to the national booksellers convention with the words Ask Me About My B.I. written on it (this was a good one, B.I. meaning Brain Injury), yelling at the top of his lungs at a Belgian train station "I hate fucking Belgian Trains!" because it didn't follow the schedule precisely. 

On the note of the Belgian train...we sat near an Austrian couple who noticed Paul was snappy and impatient with the conductor. I noticed their discomfort. Embarrassed and thinking we'd just entered Ugly American territory, I explained to them he'd recently had a major brain injury and this is what a miracle-recovery case looked like. The man's reply was, "he should still behave himself." 

I had no idea how to handle Paul in these situations. (I wasn't from a family with rage issues). And I wasn't an occupational therapist, but I was thrown into the role of being just that. Where was the book, How To Handle Your Brain Injured Beloved Spouse in 5 Easy Steps.

I think of all the advancements made in battle-zone medicine. It's a heart breaking job for families with brain injured soldiers (and it's all gonna fall on the families) coming home from war zones. Spouses and sons and daughters rejoining families and then hospitals and then rehab and then looking normal but really, not being the same. Not being the same at all.

Monday, January 2, 2017

Just Like Starting Over

This was my goodbye letter to 2009, one of my life's toughest years. This year now, 2016 has been a collective tough one, having lost so many cultural heroes and icons (for me the loss of Prince, Carrie Fisher, Leonard Cohen and Gene Wilder were particularly sad). But no amount of loss will take the place of the awfulness of finally coming to terms with the fact that my wonderful brilliant husband and companion, Paul Williams was never going to get better. No amount of my wishing and fixing would bring back the broken neuro-highways of his brain. This post in 2010 was the beginnings of acceptance that my life, our families life was forever changed. And there is some degree of relief and peace in that acceptance. 

January 2010:
I'm happy. Really, I can't remember the last time a change of decade made me so happy. It's like looking at the house you've been living in for the last 10 years-- on the outside-- for the first time, noticing its windows and doors have fallen off and it's on a cracked slab-- and wondering how you did it.

I really feel like I'm starting over, all over again. I've noticed, I do seem to run my life in 10 year cycles, though involuntarily, with the end of times happening on the nine year and
starting anew on the one.

For example, a New York boyfriend and I broke up at the end of 1989 and I started my new life in 1990 moving back out west. Or.... Paul and I broke up in 1999, lived apart for a year, I found a new life for awhile in Los Angeles, dated some interesting guys had some fun times, wrote songs and then a year later Paul and I found out we still wanted to be together. 

The first time I crashed on a nine year was in 1979. I was in an unknown garage punk band and living in Hollywood (aka Hollow ood), we called ourselves The Stoopuds. I lived with the guitar player who was 23 and his girlfriend Jane, who was 45 in a studio apartment on Hollywood Blvd. Life sucked, but so what. I thought that was the "dues you must pay" to make it, or at least to be a real punk like our neighbor Darby Crash. The dues I paid actually turned out to be a severe depression I fell into after the bass player tried to kill himself with a safety blade razor and got into a car wreck because I wouldn't be his girlfriend. So much for making it at 20. I moved back home to little Ramona and tried to pull myself out of my first depression without medication. I did do it, but it took about 5 years. Antidepressants work so much better and you don't have to lose all those precious years. But I didn't know that back then. 

At any rate, I'm at the start of a new cycle. I'm feeling excited and hopeful, things are looking up. In September I'll be touring Italy and in June Alexander and I are going to the east coast for a family and friend vacation (and probably a few shows). I've got the start of a new album brewing, having written about six new songs in the past six months. It's finally getting easier to do things for myself, having spent so many years care giving. 

Some of my friends expected me to cut loose and start partying and dating once Paul got placed in a nursing home but it didn't work that way for me. The past six months has been a kind of inward journey which has been good for my writing. I think I felt bad, even guilty, living an independent life while my partner was losing it to dementia in a stinking nursing home. I suppose it's the survivors guilt syndrome. Just give me a year and maybe I'll become a celebrity party queen like Tiger Woods adulteress, Rachel Uchitel, who lost her first husband in the World Trade Center attack on 9/11.....or not. At any rate, life starts anew.

Happy New Year 2010. 
hugs and kisses, cindy lee b