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Unlike the way I felt about Julian, it was really swell to find myself working with Ed Snowden, because in my entire life, I have never met a human being whom I have come to respect more when I’m in his digital presence.
I kept in contact with Ed through the Internet, and every sentence we exchanged felt really deep. In 2014, I hosted an event called “A Conversation Across Cyberspace” at the Personal Democracy Forum in an auditorium at NYU. Ed appeared on a huge screen from Moscow before a large and appreciative crowd.
I cherished every moment I spent with Ed because I was so impressed by the clarity of his mind. Listening to Ed Snowden talk about why he had decided to reveal the unbelievable level of completely unwarranted secret surveillance that the U.S. government had been carrying out on its own citizens was like listening to pure spring water running through a mountain brook.
While it is fair to characterize Ed as the Daniel Ellsberg of his generation, my feelings about him don’t really have much to do with that. It’s more about his incredibly deep understanding of principle, as well as how truly difficult it was for him to do what he did. I think Ed has done more to protect the individual civil liberties of those in America than any other single person. I know Dan Ellsberg would tell you the exact same thing.
Part of what had fired Ed up in the first place was that there were a lot of people within the intelligence agencies who were increasingly comfortable with how stupid and incompetent the nature of America’s intelligence gathering system really was.
As usual, it was all just about economics, in the sense that collecting and keeping every last bit of information that found its way into this huge system was a hell of a lot cheaper than trying to refine and filter it. The real question was whether the information was relevant, but determining that would also have been incredibly expensive.
Although there were many people who felt Ed was a dreadful traitor, I thought he was the least traitorous person I had ever met. One of the people who completely disagreed with me about this was General Wesley Clark. After having served as the Supreme Allied Commander for NATO in Europe and retiring from the military as a four-star general, he had won the Oklahoma state Democratic primary for president in 2004 only to then withdraw from the race and endorse John Kerry.
When I met Wesley Clark for the first time at the Burning Man festival in Nevada in 2013, he was sixty-eight years old and having one of the most Technicolor midlife crises I had ever seen. He was there after having left his wife of thirty-six or so years, and had begun keeping company with a really sexy thirty-year-old Mongolian woman who was a veteran Burner, and so they were there together.
At one point, I asked Wesley Clark about Ed Snowden and he said, “I think Ed Snowden has been the greatest traitor in American history since Benedict Arnold.” And I said, “General, we can argue all night about whether or not Ed is a traitor, but the fact is that Benedict Arnold himself was absolutely loyal to his king, whom he had never renounced.” That shut Clark right up. My point was that by doing what he had done, Ed Snowden had, in fact, been truly loyal to his country.
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At the Freedom of the Press Foundation, we have a sizable staff, and among the things we’ve developed is an open-source software platform called SecureDrop, which makes it possible for any standard journalistic outlet to bring leaks in over the transom and then publish them with an absolute assurance of anonymity. I consider this one of the most important things I have ever done in my life. We are now setting up a whole new layer of civilian communications with the kind of encryption that will make it essentially invisible.
To date, about $1.5 million to $2 million has come into the Freedom of the Press Foundation. The funding is ongoing, and I think this will loom ever larger in public consciousness as we proceed ever deeper into the era of rampant Trumpism.
SecureDrop itself was originally designed by Aaron Swartz and Kevin Poulsen, who called it DeadDrop. The platform was launched as StrongBox by the staff of the New Yorker in 2013. We then took it over and have since helped to install it at the Associated Press, the Guardian, the New York Times, the New Yorker, USA Today, ProPublica, the Washington Post, and about twenty-four other organizations.
What makes all this even more meaningful to me is that in 1996, I spoke to a middle school class at North Shore Country Day School in Winnetka, Illinois. Aaron Swartz was one of the kids in the class, and I still have a very strong memory of him. Even then, Aaron was already the person he would turn out to be.
The two of us didn’t interact directly very much that day, but Aaron was inducted posthumously into the Internet Hall of Fame at the same time I was in 2013. His father was there to accept the induction for him, and I said, “Did Aaron ever talk about that encounter he and I had?” And his father said, “His life was different after that.” When I spoke to his class that day, Aaron was ten years old.
In 2011, Aaron was arrested on charges of breaking and entering after he connected a computer to the MIT network and downloaded academic journal articles from JSTOR. Federal prosecutors charged him with two counts of wire fraud and eleven violations of the Computer Fraud and Abuse Act. He was facing thirty-five years in jail and a fine of $1 million.
After Aaron declined a plea bargain that would have put him in a federal prison for six months, his lawyer submitted a counteroffer that the prosecution rejected. Two days later, Aaron hanged himself in his Brooklyn apartment. He was twenty-six years old.
FORTY-SEVEN
HELL IN A BUCKET
The last three years of my life have been like a tour of death’s driveway. I have nearly died a couple of times and had so many different things wrong with me that it is now hard for me to even remember what they all were.
After I recovered from coding out and being dead for eight minutes, I was taking a handful of pills at home and one of them got stuck in my throat and caused me to gag. I had already swallowed half a glass of water and a bunch of pills, and I aspirated all those pills and all that water and couldn’t breathe.
They took me back into the hospital, and I woke up with tubes in my mouth going into my lungs and another tube going down my esophagus. My hands were zip-tied to the bed frame so I wouldn’t tear the tubes out, and that was its own special hell.
After they released me, I went back home and started to feel real funky. I couldn’t figure out what was wrong because it seemed to be coming at me from everywhere at once. They took me back into the hospital and did an MRI and a CAT scan and discovered my pericardium had filled up so tightly with blood that my heart was being strangled by it. This is called cardiac tamponade and it had been going on for about a day or so, during which time my blood pressure and pulse rate declined so rapidly that I now had acute organ failure at all levels. I was then immediately put on dialysis and a respirator.
My daughter Leah was my medical surrogate, and they said to her, “We don’t know whether to go directly into his heart or use a big needle to try to get the blood out. Because we’re afraid if we do that, we might hit his heart while it’s jigging around.” Poor Leah had to decide, and she said, “Let’s open it up and see what happens.”
They opened me up and found out that yes, my pericardium had filled up with blood. Once they were able to get it all out, my heart went right back to beating normally, and all my organs rapidly began jumping back into the saddle. Nonetheless, major organ failure is really tough to recover from, and I was now actually in much worse shape than I had been after the heart attack.
When I came back home again, I was in a phenomenal amount of pain. I found a Chinese doctor who was willing to prescribe as much pain medication as I needed, and I was also taking ten milligrams of Dilaudid a day. At one point, someone who was looking after me took a quarter of one of those pills for a headache and was totally fucked up for twelve hours. So by then I had obviously al
ready developed an incredible tolerance for the drug.
I became so dehydrated that I had to be admitted to the hospital again. Both my physical and mental health had been declining for weeks. I couldn’t make myself eat, and I was sleeping a lot during the day and getting zero exercise. I was never incoherent but you did sometimes have to pack a lunch to get to the end of one of my sentences.
Although it was never my intent to do so, some of those closest to me began wondering if I was trying to end my life through my use of opiates. When I returned to Toad Hall, John Gilmore’s house in the Panhandle in San Francisco where I had been living, Dr. Beth Kaplan and others who had been taking care of me began arranging what they called a “powwow.”
The purpose of the event was to get me to understand how grave my situation really was and how out of control my drug use had become. The powwow was scheduled for May 12, 2016, with people like Weir and Ramblin’ Jack Elliott, with whom I been writing new songs, and Mountain Girl as well, coming to the house to urge me to regain control.
As opposed to an intervention, they wanted to present me with options. The overall plan was for me to cut down on the pain medication and regain enough strength to undergo yet another back surgery followed by a period of regular physical rehabilitation. To make this happen, they wanted me to “pull the wire” and detach myself from all forms of social media, leave the house, and go somewhere else to continue my recovery. I cut the powwow idea off at the pass before it even happened and instead managed to reduce my Dilaudid intake on my own.
During the second week in August, I caught a flu bug that had been going around the house. I went back into the hospital, where they discovered my hematocrit was dangerously low, and that I was not producing any new red blood cells. They put me on an IV, but I then began suffering astonishing stomach pain. They were going to let me go back home until a doctor found I had a gallstone as well as four pseudocysts on my pancreas.
They wanted to remove my gallbladder immediately, but I refused to let them do so because I wanted to get the back surgery done first. The pancreatitis eventually subsided, but the doctors told me it would return in seven to ten weeks because I had not yet passed the gallstone. By then, I had not gotten out of bed in days except to walk to the bathroom once. I was getting progressively weaker while also being given massive doses of Dilaudid for pain.
When I was finally released from the hospital, I was put on a low-fat diet. Having never been much good at following any kind of rules, I began eating all the stuff I love, like corn nuts and cucumber salad. I was then taken right back into the hospital, where different doctors alternately had me eating nothing and then eating as much as I possibly could. I was still in great pain and so I began thinking seriously about whether I should write a book on the truly incompetent nature of most medical care in America.
A month later, I was still in the hospital. I was now suffering from an upper-bowel obstruction and still in a lot of pain. I had been given Narcan to clear my bowels, which also caused me to withdraw from all the pain medication I had been on. I could not take any food by mouth and I was on a triple IV so I could get nutrients and antibiotics and also have my blood taken regularly without having them stick me with needles.
By then, I had spent seven weeks in the hospital, and the concern was that I might not be able to survive one or both of the surgeries I needed. About five days later, one of the top gastrointestinal specialists in the game went in to remove a section of my bowel.
What he found was that, due to the severe pancreatitis from which I had been suffering, my small intestine had been sucked up and twisted in a manner that had choked off all the blood flow. The doctor resected about a six-inch section of my small intestine. He also removed five liters of fluid, decompressed my bowel, and took out my gallbladder.
Because my body had been unable to deal with all this fluid, there was some around my lungs that they went in the next day to remove. Once they finally got that all done, I went into a palatial skilled nursing facility where I spent another month recuperating until I was strong enough to get back up on my feet again.
On October 24, 2016, Bob Weir, Jeff Chimenti, Steve Kimock, Jerry Harrison, Lukas Nelson, Rob Eaton, Michael Kang, Sean Lennon, Les Claypool, and Ramblin’ Jack Elliott performed at a benefit for me at the Sweetwater Music Hall in Mill Valley. Although you can only get about three hundred people in there, I signed a bunch of guitars, and a lot of other memorabilia was auctioned off and the show wound up raising about $250,000 for the John Perry Barlow Wellness Trust, which we had set up to help me pay the overwhelming medical bills that someone can pile up only in America.
Although I was not able to attend the event myself, my daughters were there to thank everyone for coming, and I was truly stunned by the way people responded to it. Even my old friend Bob Weir seemed pleased by the way it had all gone down. Although he has never been prone to making such statements, Weir later told me that what he liked best about the night was knowing he could play whatever he wanted and everyone there would be happy to hear it.
For me, the last three years have truly been a piece of especially rough water. Although I did end up celebrating my seventieth birthday in the ICU at UCSF Hospital, I was surrounded by several of my friends as well as Elaine and all of my daughters. Sixteen days later, on October 19, 2017, my daughter Leah gave birth to a daughter named Willah Brave Barlow Dunwody.
Although my first grandchild was born in the afternoon and I was being kept abreast of the entire process by text, Leah herself did not call to tell me the good news until that evening. When I said, “Why didn’t you call me sooner, Leah?,” her response was, “Uh, we were kind of busy, Dad.” Which, when you think about it, does kind of make eminent sense. Thanks to Willah, I have now been given yet another opportunity to become a great ancestor.
The great marvel and incredible irony of what I have been through during the past three years is that I became ill on the twenty-first anniversary of Cynthia’s death after having flown back to San Francisco specifically to talk to Gilberto Gil about learning how to accept love. What has happened to me since then has been the most rigorous course in the acceptance of love I can imagine.
Throughout this ordeal, I have come to realize just how much genuine pain I have caused in my friends and family with my own pain. Because I didn’t know how to stop that from happening, I had to learn how to accept a brand-new kind of love. And while I have really been trying very hard to do that, it has served to up the ante on what I formerly considered to be the true nature of suffering and its lessons.
My survival has depended on my willingness and ability to accept the love that has been showered on me by my daughters, my friends, and strangers as well. I am now much more capable of receiving love gracefully than I could have ever been before all this happened. And for that, I am profoundly grateful.
EPILOGUE
LOVE FORGIVES EVERYTHING
On September 12, 2012, I gave a TEDx talk at Cabrillo College in Aptos, California. I decided I was going to try something new and different, and not prepare anything. By then TED talks had become such a big deal that not even the English sonnet has had as much stuff written about it.
I got out there onstage and said, “You’re not going to believe this and it has taken some doing to pull this off, but I am before you now without the slightest idea of what I’m going to say.” I could hear this sudden sucking in of breath like, “What?” And then it occurred to me that what I could do was sit down like John Cage and let the audience experience eighteen minutes of nothing but silence.
Before I did that, I wanted to give them some context. Taking out my cellphone, I said, “This is kind of a cheap trick but I want you to listen very carefully to this quote by Franz Kafka. ‘You need not leave your room. Remain sitting at your table and listen. You need not even listen. Simply wait. You need not even wait. Just learn to become quiet and still and soli
tary. The world will freely offer itself to you, unmasked. It has no choice. It will roll in ecstasy at your feet.’ ”
Then I said, “And so what I’m going to do now in the time remaining is grab the first story that comes into my head from all the stories I could tell you.” I began talking about the time in my life in 1989 when I was driving back and forth between Wyoming and California maybe twenty times a year. I kept trying to find other ways to cross the Great Divide Basin, and I was exploring one of them on a late September evening.
It was cold and I was driving through Fallon, Nevada, when I saw a guy who looked like hell sitting on the edge of town with a sign that said ANYWHERE BUT HERE. I was thinking, He probably doesn’t mean Eureka, Austin, or Ely. He probably means Salt Lake City, which is about seven hundred miles away, so if I take this fellow on, I’m going to have him with me all night long.
But I did take him on. He got in the car and looked a lot worse than he had by the road and smelled even worse than that, but a weird feeling of peace came over me and I felt perfectly okay about having him there. We started talking, and it turned out he had been born the day before me in a tough part of Queens, New York. He’d gone off to Vietnam and been shot up and fucked up and had come back home with both a psychological and physical disability but had been more or less making it in New York City.
He’d had a cab driver’s license and was actually a good enough saxophone player to play session gigs and had an apartment and a girlfriend and a functional life. Things had been working out for him, but at one point his landlord stopped providing hot water to his apartment.
Since he was still a little bit sideways, he quit paying rent because he thought that if he didn’t pay his rent, the landlord would start giving him hot water again. He came home one night and his door had been padlocked three different ways. All his stuff was gone, his girlfriend was nowhere to be found, and both his hack license and saxophone were inside the apartment.
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