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 already 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.