Thursday, August 29, 2013

NFL Agrees to Settle Concussion Suit....

"The N.F.L. agreed to pay $765 million to settle a lawsuit brought by more than 4,000 retirees with advanced dementia and other problems as well as the families of players who have died from what they claimed were the long-terms effects of head trauma."

Yep. Head trauma= Higher chance of dementia. 

http://www.nytimes.com/2013/08/30/sports/football/judge-announces-settlement-in-nfl-concussion-suit.html?hp&_r=0


Meanwhile: I will be giving a talk on brain injury and caregiving at the May 15, 2014 Brain Injury Assoc. of California conference in Los Angeles. 

Sunday, August 25, 2013

Oh Dear

Club Passim is still a go but our wonderful Mary Lou Lord is in the hospital healing now from a fall from a fire escape and has broken her hip and fractured her leg. Please send her your thoughts and prayers. 

Meanwhile the very valiant show-rescuerer Cormac McCarthy, a songwriter from Maine, is stepping in to cover for her at the show tonight at Club Passim. 

Sheesh. 

http://www.cormac-mccarthy.com

Wednesday, August 21, 2013

CLB & Mary Lou Lord Sunday August 25th Club Passim Cambridge,MA

Cindy Lee Berryhill & Mary Lou Lord Live-Web-Feed at Club Passim


Mary Lou and I will be doing a special appearance at Club Passim this Sunday. We've almost sorta met and almost sorta know each other, so this Sunday we will be hanging out on stage together telling stories and singing songs and gettin' to know one another at a place that has the deep vibes and history of our musical ancestors. Please come join us for what could prove to be a very interesting, possibly revealing, or even career damaging evening of songs and tall tales of love and drugs and rock and roll.

Above this photo, taken by Alan Bershaw at his house party last week, you will see a link to a page that will allow you to join in and watch the show from the comfort of your recliner chair at home. Show is at 8pm EST

Wednesday, August 7, 2013

Caregiving Talk Part 2


  1. The Accident and Hospital: what happened/who is Paul Williams
  2. Post Hospital and Rehab: Its a Great Big World and You Are On Your Own
  3. Things Almost Get Back To Normal: Now You know Things Will Never Be The Same Again, But Carry On
  4. Later On: When Things Change Again/or, They Didn't Tell Me He Could Get Worse....Dementia/Parkinsons...
  5. When It's Time To Ask For Help: Caregiver's Burnout, Pacing Yourself, Resources, Doctors, Will and Conservatorship
  6. How To Know When You Have Reached Your Caregiving Limits/Or, Something Bad Happens
  7. Nursing Homes: Making the Big Decision/Lying, Conniving and Getting What You Need
  8. Letting Go and Turning it Over With An Eagle-Eye Open At All Times: Visitations, Keeping Track of Nursing Home Care
  9. Elder Law and Attorney's Persepective
  10. What Happened: a medical perspective
  11. Acceptance and Letting Go Of What You Wanted: Hospice and Loving Goodbyes


Visiting The Nursing Home:

Now that your loved one is in a skilled nursing facility or if you have the dough, a private long-term care home (some can be as small and charming as 5 patients per house) your roll shifts from warrior to advocate.

The nursing home I had to "dupe" into taking Paul, now needed to be my partner and Paul's caregiver. I had cool out and learn how to find the good in the place that was Paul's new home and find out who, amongst the employees would be my helpers. There were nurses that were very kind hearted and that helped a lot.

Even with some helpers you'll need to go in on a regular basis to make sure your loved one is being cared for properly. It really takes some time and energy and I found the noisy bells and whistles of the nursing home and the disoriented sounds of untended to patients an emotional challenge. Sometimes we'd take Paul out for drives or bring him back to our apartment just to get away from the noise aspect. Or we'd go out to the patio and throw a big red ball back and forth with him.

Here is a list of things to bare in mind if your loved one begins to live in a nursing facility: 

1. Make sure their is an official list of everything your loved one owns/has a the facility so when something is lost (and it will be) you can hold them accountable. 

Paul was blind without his glasses and they were lost frequently, usually be left in the dining hall or in trousers taken to the laundry. We had several sets of expensive hearing aids lost and the nursing home paid for them twice, then warned me they wouldn't buy them again, so I kept them at home for our visits with him.

2. Be a squeaky wheel; if something doesn't seem right get someone's attention

When the nursing home called me this past January to tell me Paul wasn't looking too good and they were ordering tests to see if he had a urinary tract infection, I went in to see what he looked like to me.  I was aghast, I had been in to be with him the week before and since then he'd tanked heath-wise so much, he appeared to be dying. I told the head nurse (who was new), I think he's dying and I think he is dehydrated. She said he wouldn't drink but he should be okay through the weekend and the tests would be on Monday. I insisted he be tested for dehydration today. It took them 11 hours to get the results and it turned out he was severely dehydrated. Paul was immediately sent to the ER and put in ICU with a mega-rehydration drip. The doctor said Paul's body was like a man that had been found on a desert island, with no water and that he probably wouldn't have made it through another day.

3. Teeth and other "nonessentials"

Ever wondered why basic health care doesn't cover teeth. I have. When I was up in Portland, OR a few years ago I saw a Kaiser office with the words "Medical and Dental" on the door. Weren't they the same thing? At least Portland Kaiser covers teeth. But skilled nursing homes don't really cover that. I was able to make the case that Paul was in urgent shape with his teeth all falling out at once and they offered to get him x-rays, I drove him there and brought him back. Yep his teeth were breaking off and falling out. This was because the nursing home was not brushing his teeth, nor anyone else's...

The teeth issue, losing them for no reason other than neglect, was just about the worse disgrace and dishonor to a human being in a first world country I can think of. It was tragic.

I blamed myself for not being there day after day to brush his teeth, but wasn't this what the nursing home was getting paid $5000 a month for? Just like the loss of Paul's glasses, (the pair he'd had when he came in went away into the unknown), something that defined who he was and how he looked, the teeth were the final straw, a last indignity to ones personal corporeal representation in the world.

4. Make nice when and where you can

When Paul's teeth began to bleed and break I had a care meeting with the staff. I was really angry and  I wanted someone to blame and yell at. But where would that get me? If I polarize my relationship with the staff they won't want to be my partner and Paul's care will suffer even more. So I brought in a box of See's Candies and we passed it around and giggled for a minute about chocolate. We still had to talk about the hard stuff, but this started the meeting out in a positive way. Plus, the sugar helped my mood.

5. Remember most of the staff is making little above minimum wage and they are over worked

6. Remember to Breathe and keep a sense of humor









Ray Mungo, Kurt Vonnegut, Paul

CLB and Paul Science Fiction World Con 1993


Just out of Rehab-July 1995


1996 Lecture on Dylan's Rolling Thunder Revue for Dylan Fest Austria


Guest of honor at Castle Plankenstein Austria 1996


Pauls friend and German agent Dieter 1999

1998

2002 with Alexander


Home for a few hours but living in a nursing home 2009

One of the remaining joys, throwing a ball back and forth, Paul and Larry Greenfield 2010
Playing solitaire 2011

Home for a few hours 2011

Paul's last birthday May 19, 2012


January 2012




January 2013, a week before the severe dehydration

Family visiting Paul while he is in hospice care














Saturday, August 3, 2013

Caregiving Lecture Notes Part 1

I have a talk to give to the San Diego Brain Injury Foundation Saturday August 10th (10am) @ Scripps Encinitas...so I'm going back and looking over my mental notes on caregiving and my experience with my husbands brain injury and later dementia. So here we go back in time:

Paul Williams Accident and brain injuryTime line:
1. Paul Williams falls off bicycle going down a hill in Encinitas April 15, 1995
2. Paramedics ask him questions and all he can say is "Paul"
3. He is taken to trauma center at Scripps Hospital and is taken into surgery within the hour
4. Both temporal lobes, on either side of his head are opened allowing the brain to swell. One side needs additional surgery with 5 centimeters of damaged brain being removed
5. This was the weekend of the Oklahoma City bombing and Christopher Reeve's spine injury. I sat in the waiting room for hours, awaiting word on Paul while images of these news stories played over and over on the hospital tv
6. I wasn't married to Paul at the time and the doctor had to make special accommodations so I could be with Paul in the ICU
7. He improved every day. At the end of the first week his brain surgeon said to me: "He could end up like Ronald Reagan" I wasn't sure if that meant: Republican, President or dementia
8. He was sent to Kaiser Hospital after 2 weeks in trauma ward at Scripps. This meant he was improving and now downgraded to "stable condition"
9. After two weeks of Kaiser he was sent to Sharp's Rehab Hospital for Spine and Brain Injury and lived there for a month
10. Paul was then sent home with me and received several months of outpatient rehab from Sharps.


YOU'RE ON YOUR OWN KID: 
Once Paul was considered by his doctors beyond the point of needing further rehabilitation from the hospital and then the rehab hospital, and then the outpatient rehab,  he was then released to me, and himself and was deemed 'Okay' to be on his own and back in society.

The problem with this was he wasn't quite okay:
1. his emotions were all over the map
2. he was a terrible driver with a large swath of blind spot
3. he was unpredictable

Pick your battles, know what you can live with and what are the deal breakers:

In regards to the bad driving I tried to get his doctor to tell the DMV that he needed to be tested before he could drive again. He didn't agree. I couldn't believe it, I was on my own with my concerns. So,  I went to see a therapist from our health care provider who said to me:
" Well, look at it like this. There are a lot of old folks out there that shouldn't be driving either,
make peace with it, there's nothing you can do about it." Her suggestion was I should suck it up and take it, and I suppose, be willing to get into an accident." I decided to tell Paul I was not comfortable with his "blind spot" while driving and said I needed to drive for "my own comfort" and that " it was my own issue".  He accepted this as my problem, though on occasion he would bring it up again as a problem that "we" had.

The good news was Paul was able to get right back into writing books and doing lecture tours and editing other writers for his subscription rock newsletter Crawdaddy. He also started a new and good paying job, editing the pop music section for a hifi afficionados magazine. He was offered the job within days of getting from from the hospital. He also bought a brand new computer and got to work on transferring files.

It was a miraculous recovery. Within 3 months of the injury he was at a book sellers convention, as he did each year, meeting with agents and talking about his books. Five months after the injury he went on a lecture tour in Europe, talking very educatedly and with enthusiasm about the work of Bob Dylan. I couldn't have stopped him from doing these things if I'd wanted to, and his doctors and nurses did try to stop him from traveling. That wasn't going to happen. So I went along as 'handler'.

Years went by, 8 years, with more books written by Paul. He was still very good at multi-tasking and had 3 or 4 projects going on simultaneously. Writing articles, editing the complete works of Theodore Sturgeon, fielding questions and doing interviews about his late great famous friend and writer Philip K Dick and on and on....He was doing very well, (even with the bad driving).

Paul went back to writing books and articles and multi-tasking and doing lectures, there is a chance your loved one could change yet again.


WHEN THINGS CHANGE AGAIN or THEY DIDN'T TELL ME THINGS COULD GET WORSE

We had a baby in 2001, Paul turned in his latest book on the work of Bob Dylan and began writing on a new book in the series... He began to have anxiety attacks and sometimes he felt the room spinning in a vertigo kind of way. He began to walk slower and sometimes he would talk just a little bit slower. It was not very noticeable at first. I thought, it could be he feels like me, I'm tired all the time from taking care of a little baby.

I don't want to be a prophet of doom here, not everyone with a brain injury goes down the path that my husband did, (Paul had a very very serious brain injury that required the removal of 5 centimeters of grey matter), and my hopes and prayers are that yours do not. But some folks that acquire a brain injury or multiple concussions can later begin to show signs of a new problem. For Paul, just as he was improving on all fronts he began to have severe anxiety attacks that made him feel extremely disoriented. Many days he would say to me "my brain feels really fuzzy today" or "I'll drink coffee to get out of this fuzzy-brain feeling". In retrospect, I believe, it was the beginning of early onset of dementia due to his traumatic brain injury.

Things have changed much now that multiple football players have donated their injured brains to science and there has been a paradigm shift in that it's common knowledge that tbi can sometimes lead to dementia or Parkinson's but from 2004-20010 that wan't the case and we, including the doctors didn't know what was going on with Paul.

Paul tried numerous anti-depressants, some drug for Parkinson's, some other drugs like Neuronton that are supposed to stimulate the brain. Nothing helped. As time went by, over a period of about 2 years, he became less steady on his feet, talked much less, couldn't remember where we had stopped reading in the book we were reading aloud together. But the biggest difference in him was he began to write less and his office became strewn with papers and unfinished bits of things and with many unopened letters and unpaid bills....


GETTING AHOLD OF THE FINANCES: 

I am grateful that a friend had told me years earlier that if I was going to get Paul on social security disability that I would need an attorney. He was right, even the attorney's request was turned down by social security the first time through. The next time we met with an official, they saw Paul and he was accepted.

Another good thing that worked in our favor was bankruptcy. Im relatively certain now that Paul knew something was not right with him back in 2002 and he pushed on the idea of us going into bankruptcy. He had a huge debt, nearly $50,000. that I was unaware of. As it turned out many of the years after the brain injury he had not being making as much money as he had before and so began using the credit card for basic living expenses. I'm thankful this problem came to light while he could still fill out forms and make decisions. It was, I believe now, a gift.

I wish that I'd known ahead of time, I think I would have been more proactive about laying the ground work for being a single-mom and getting ahold of our finances before things spun out of control.


I was not one of those women that naturally takes ahold of the family budget and responsibilities, I'm a musician after all, so when it became clear that Paul was not capable of paying and keeping track of our bills, I lurched out of denial kicking and screaming. Fortunately Paul had been an extremely organized record keeper up until the point where he no longer could. Now most our bills and his writings and letters to him were scattered on the office floor.

Internet, phone use and credit cards ( elder abuse issue) Wish I had seen this coming so I could have cut off the credit cards earlier, or PayPal accounts etc. Start separating or taking control over family finances.

Coming out of denial that something was going the wrong direction with Paul's brain was hard for me, but it all came down in 2004. He had a car accident with our 2 year old on board, rear ending another vehicle that was stopped at a red light. And then a month later he bit that 2 year olds arm trying to get the boy to stop interrupting his work on the taxes.

I hadn't been prepared for this, no one told me that things could go the other way, the rehab, the doctors, the nurses had said things would just keep improving...

Segueing From Spouse to Caregiver: 

The rest of this story is about me landing on the ground....taking things one day at a time, becoming a responsible adult that could work and make a living, take care of Paul and our young son and find some time for myself. It's a daunting enterprise but it's possible. Just keep your head and find a support group.

For me, I found friends to be very helpful. As things with Paul worsened some friends went away and some came closer. In retrospect I wish I'd gotten myself into some kind of therapy group earlier. Eventually I went back to a 12 Step Program I'd been in years before. It would have helped if I'd gotten back to it during the 'breaking the denial' time of the mid 2000s. I needed a place to put my anger and sadness. I felt like I had to 'buck up' suck it up and take it all and be a warrior for my family.

I found a few resources useful at this time. One was the Southern Caregiver's Resource Center. I arranged a meeting and told the social worker my story. We talked about what she called Caregiver's Burnout. She made me feel okay about what all I'd done so far by saying "Some caregiver's in your position would have given up a while ago, and some could go longer. It all depends on what you can handle and only you will know your limits". She helped me get onto a temporary program called Caregiver's Respite Time and the State of California paid for Paul to go into a very nice and nearby Alzheimer's care facility for 12 days. It was a lovely place, they sewed his name into every shirt and pair of trousers he came in with. And it was heaven for me and Alexander to be free to drive out of town or just hang out somewhere besides home for hours at a time.


Avoiding Caregivers Burnout:
1. Make time for yourself
2. Honor your feelings and make time for them
3. Know when you are reaching your caregiving limits
4. HALT

When It's Time To ASk For Help

By 2009 I couldn't take care of Paul properly any longer. Alexander and I could rarely get away anymore without being afraid Paul would catch the kitchen on fire. He did indeed start an oven fire when we were away for a day even with our neighbor looking in on him every hour, Paul put a pan in the oven with oil in it, the apartment alarms went off and when we got home our neighbor was spooning oil out of the bottom of the oven.

I rallied a little money from Paul's family and used some savings and hired a full time "baby" sitter to stay with Paul while I was at work. It was expensive. I didn't make enough money to keep this up and I couldn't handle this for long...

Nursing Homes: Making the Big Decision, lying, coniving and getting what you need
Now I cried at nights knowing that I had to get Paul into a nursing home. But making the decision was not the toughest part....finding a nursing home that would take a 60 year old man that could still walk was maybe the biggest challenge yet. I hope you don't get to this place with your loved one for many many years.  But if you do, know that others have been there too.

You may have long-term health insurance for your loved one. We didn't, who thinks they need it when they're 30 or 40 or 50.
So I needed to separate my finances from my husbands. I needed to close his credit cards and all but one bank account that could have no more than $2000 a month in it. I decided I needed help so dear friends and fans of Paul's came together and started a donation fund so we could have funds to pay for an attorney to settle Paul's affairs, get an official will made and get Paul on the MediCaid program and get him into a nursing home.

Here are some things I learned about getting into a nursing home:

1. Find a few nursing homes you can "live with"
I needed one that was in our neighborhood in Encinitas and was clean and I
could take my young son to
2. If your loved one is in the hospital it's WAY easier to get them straight into a home and you can avoid most of the problems I encountered. But Paul was physically healthy and that was a problem.
3. The nursing homes will have a lot of reasons why they can't take your loved one:
"too young, everyone here is elderly", " we have very few men", "he walks, so is at risk to leave", "we don't have any beds available and rarely do", "we hardly ever take a new MediCal patient"
Don't accept any of these rejections, keep coming back

This is what I did:
1. I charmed them with articles about Paul, I showed them an article on him in Rolling Stone and a donation check from Yoko Ono for his care
2. I finally figured out you can't tell them you are getting him on MediCaid. They don't want more MediCal/MediCaid patients cuz the nursing home gets paid a lot less for them...
3. I LIED: (my parents taught me not to lie. But sometimes, like this, you need to) I told the nursing home that we changed our mind and were not going for MediCaid, we were gonna be Private Pay and that all the copious donations for Pauls care had made that possible. I really only had enough dough to pay for 3 months of Private Pay at $7000 a month, but they didn't know that. I told them I'd pay for the first 3 months up front. And you know what, within 24 hours a bed in the good side of the nursing home suddenly became available. Paul was in. Within a few weeks my attorney instructed me to tell them Paul was MediCal/Caid pending and not pay them any more money. Done. He was in.
4. They were not happy that I tricked them so they told me he couldn't stay because he could walk and was at risk for leaving, they said he'd already tried to go out the emergency exit. I knew it wasnt true because he was so far in his dementia he thought he was at home all along. I brought in an Ombudsman that helped me stand up to the nursing home and Paul was in for the long haul

Visiting The Nursing Home:
Losing their belongings...dental care...letting go of his care and knowing he's not getting the help he needs....tougher earlier when he needed mental stimulation, puzzles and cards and exercise

....more to come...


Thursday, August 1, 2013

A Little Something From Paul On Das Energi (written 1998)

Das
Energi
Paul Williams
Das Energi-Where Did This Thing Come From?
by Paul Williams

In the summer of 1970, when I was 22 years old, I was given a rather wonderful gift. I was allowed or inspired (filled with breath) to be the author or vehicle of a little book called DAS ENERGI, which eventually found many enthusiastic readers who have felt at times that the book speaks for them, so much so that they not only read it again and again but also are often moved to share it with friends and strangers. What a nice gift! Like getting to write a hit song. Do I know where this "consciousness handbook" came from? Not exactly, except in the sense that it came from the same place an unexpectedly wonderful jazz solo comes from. Out there. In here.That mysterious place. "The Source."

But since this year [1998] marks the 25th anniversary of DAS ENERGI's
publication (by Elektra Records, the first and only book they ever published), and since
Channing asked, I'm inclined to share with you some of the circumstances of the writing of my only bestseller (500,000 copies sold so far, far more than any of my 24 other published
books, but I'm also fortunate that the other books have not been too painfully jealous of
all the attention their sibling still receives...).

I was living near the ocean when I wrote it. I was a long-haired hippie living in a wilderness commune on an island in the Georgia Strait, 100 miles north of Vancouver. I'd been there about three months. My girlfriend and I lived in a tiny cabin built out of cedar poles and bark and shakes by a previous communard. The cabin was off in the woods, far from the garden and most of the other buildings, but still close to the water. I had a spiritual practice (though I didn't call it that) that year of jumping into the ocean every morning, regardless of my mood or the weather. I remember when I wrote the opening pages of DAS ENERGI ("The only sin is self-hatred"... "We are in the Garden, let us open our eyes") I was sitting in the sun in a favorite spot, a grassy bluff overlooking our private, nameless cove, where I often went after my swim, with a pad of paper, to write letters to faraway friends (it was a great ritual and adventure to row or sail five miles across Desolation Sound to Refuge Cove, home of the region's only store and post office, to pick up and send the mail).

An important detail of the story is that when I found myself writing these intriguing lines of prose-poetry, instead of a letter to whatever friend had been in my thoughts a few moments earlier, and then when I realized later that day or anyway for sure by the next morning, that this could be the first page of a book, I was unexpectedly breaking a fast.

In a typical fast, one abstains from consumption, but since I had
been (and still am) almost addicted to expression, I'd decided in February after I finished my
previous book, TIME BETWEEN, that I needed to undertake a fast from writing, a kind of
abstention from expression. This at a time when I was caught up in a very energetic
communication with my felt (and mostly unseen) audience. TIME BETWEEN was over a hundred thousand words,and written in two months. DAS ENERGI, which broke the fast
("Here I am!" "Oh, okay. I guess it's been long enough... Goody!"), is probably less than ten thousand words. It was written in 18 days.

Once I realized this was a book I was writing (first, of course, I went back to the cabin to read those first pages to Carolanne, who responded encouragingly), I knew pretty quickly what its title was. That's because I recognized it as being a book I'd prophesied or imagined and announced seven months earlier. (This was an absolute textbook case of Intention resulting in Expression of Universal Spirit.)

On the 8th page of TIME BETWEEN, on December 28, 1969, I wrote: "I
Paul Williams have written many books in my mind:" This was followed by
descriptions of five such Intentions, and the 5th said, "DAS ENERGI is my Taurus (Marx,
Freud) masterpiece. a true collaboration, tour de force of economic theory,
written (and read) by the collective unconscious. Property is out. Money ain't worth much to me. How do things really work in the world today? We all know more than we care to
believe about the way energy flows... Which is all we need to know to be healthy &
happy. Send for your free copy today."

Where the F did this come from?? The acid I was taking? Something
in the air? The collective moment? Hey, cliche though it might sound like, Carolanne and I had met the previous August at the Woodstock Festival.

I know where the title came from. I was aware (had a good high
school education) that Lenin had written a little book called WHAT IS TO BE DONE?, borrowing the title from an earlier revolutionary self-publisher named
Chernyshevsky. I definitely was (and still am) attracted to the kind of broadside-booklet publishing Chernyshevsy and Lenin and Tom Paine were doing (you won't be surprised to learn that I later, 1982, wrote a booklet called COMMON SENSE). And I'd read
Heilbroner's THE WORLDLY PHILOSOPHERS so I had a sorta benign, very non-Marxist, appreciation for Marx's accomplishment as an author/visionary. The real visionary sees not the future (yeah Karl thought he did, but we've all had similar delusions) but the present. He or she sees more deeply into the present. As I understood Heilbroner, in my 12th-grade economics class, Marx was looking into and questioning the centuries-old
fact that power in Europe had been organized on the principle that he who has the land has the power. But, Marx realized and pointed out, that had changed while no one was looking...now capital had become the real source of power in human affairs; if you had capital you could buy land and otherwise make economic activity possible. Marx articulated some new and very potent insights into how things actually are in the world we live in.
And so I had the bright idea (I have a bad habit of falling in love with my ideas) that the paradigm (we didn't use that word then) had shifted again, and that now even though capital still held the visible strings and went on throwing its weight around just as land (the aristocracy) had done in Marx's day, actually things had changed, and if you looked closely (with LSD eyes, say) you could see that the real source of economic power in our brave new world was not capital or land but rather had become energy. I wasn't talking
about fossil fuels. My vision had to do with the vital importance of human energy. Who's got it? Bob Dylan. Billie Holiday. You and me. The individual. Let's take charge.....

So, DAS ENERGI as a parallel title to DAS KAPITAL. There were
some flaws in my German, but oh well, poetic license. (It's spelled energie, and it's feminine, die energie, but that wouldn't have had the right ring to it.)

This thinking about the title was back in December, or maybe it had
been in my mind all autumn. But now, in July, I was writing the book...the way you walk across the snow or the desert. Each step follows the previous ones. I'd get up each morning and write a few pages, before or after my swim, mostly following the motion of the pages I'd done already, trying to clarify something, or vary the tempo, or bring in separate threads that seemed to belong to the same big picture. Gotta talk about fear now. And collective consciousness. And ecological responsibility. And the mental tricks we
use to obstruct and confuse ourselves.

All handwritten. Print, not cursive. Whereas TIME BETWEEN had
been mostly typewritten. Although it was a precursor to DAS ENERGI in the sense that each typewritten page (or handwritten or whatever) was meant as a picture, and you could feel/see the dance of the words while you read them. DAS ENERGI very quickly became all about the negative space around its words, and the impact of placing a thought alone on a page. Especially after I wrote the 7th page, probably the 3rd day: "You are God."

Aha! It was supposed to be scary as well as challenging. Awakening. The jig's up. Time to take responsibility!

One of the manuscript's first fans was a French-Canadian woman who
lived at the commune for a while, Therese, quite a bit older than the rest of us
back-to-the-landers and sexual idealists and draft dodgers. She wanted to translate the book into French. I remember making a copy (by hand, by pen, no Xerox, no electricity) for her to take back to Montreal with her. Nothing came of that as far as I know. The book has so far appeared in German (quite successful, under a different title), Japanese, Hebrew, and Czech. And American.

I think this is the most of the story I've ever put in writing; and there's more to tell. But my intention is to rest before blurting out more expression of what it was like to be a vehicle of universal spirit, in this case. I did always mean for the reader to think of the book as something he or she almost wrote themselves. Hence my decision not to put my name on the cover.


3/21/98   Encinitas