A special one-on-one as Steve talks to a hospitalized Doc Searls, Gang member and friend, about his trials and tribulations with the medical community. Recorded Thursday, June 19, 2008.

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Steve Gillmor: OK, this is Steve Gillmor, this is the Gillmor Gang for Thursday, someday in June, and I have got the late great Doc Searls on the phone.

Doc Searls: [laughs] Don’t hurt me. Mostly late, I don’t know about great, but anyway I am not dead yet, just working on that, but not dead.

Gillmor: OK. I got to say when you get on Valleywag, it is not clear if you are still with us.

Searls: [laughs] Well, I have to say Paul Boutin called me. He is an old friend from pre-Valleywag days and I don’t know what he said, but I hope it was nice.

Gillmor: Well, I think more to the point, I don’t think you know what you said.

Searls: [laughs] No please, I am sure it is true.

Gillmor: So, what can you reveal about your location and reality?

Searls: Well, in reality I am in a hospital in Cambridge, Massachusetts with a really disgusting disease called pancreatitis. If people want to see more about it, it is on the blog. I am getting better, I was really bad for a while there and I am still bad. Actually, you caught me at a moment when I frankly was uplifted by listening to the radio. There is a fabulous station here in Boston called WERS out of Emerson, you know about that right?

Gillmor: I do.

Searls: Yeah, and they were playing just a perfect stretch of music and every song was therapy, because I realized at this point that I needed noise in my mind other than what my mind made up that was fairly random. About an hour ago I kept falling asleep and every time I start falling asleep, I go into a dream that would be icky in some way or another and I turned it off and I wake back up again and it was like I love that movie, I don’t like that movie.

And then, I realized that I had to get up and move around and I walked my - let’s see, it is only three bags of fluid on a stand - around like I am an old guy. This is what has happened, I am an old guy pushing a bag stand around the halls of the hospital. The kind of thing you kind of don’t want to see when you are visiting other people. And still, I sort of giving up almost career [inaudible], but that helped a lot.

And I got back here and I thought, ‘well, before I go to sleep I think I will listen to some radio.’ And at the bottom of the dial on 88.9, there was WERS and they were playing, let’s see what was it, I don’t know, David Bowie’s, Bag of Hammers, I mean THV 15, somebody called Thao with Bag of Hammers, a great song. There was a song called Take Care by Yo La Tengo, which just spoke right to me.

And then, it just blew my mind when I heard - it chokes me up now thinking about it - this song Caravan by Van Morrison. I forget my voice too tired than normal because my throat is full of stuff; my throat is kind of restricted.

And there [laughs] is a cloud outside that looks exactly like the underside of a toilet seat. I think that if you have an attention deficit syndrom going right now [laughs]

Gillmor: Yeah, this is definitely one of those.

Searls: What was your perspective about this? Anyway, I am coming up, two blocks going down, I missed the main thing. Anyway, it was just an incredibly meaningful song for me and quite aside from the fact that I think it is one of the classics. There have been at least three great albums, which got in a shitload of airplay on progressive rock stations like the one I worked for called WDBS in Durham.

This is where I got my nickname “Doc” by the way, it was cool back then, like in 1974 - 75, but it was on Moon Dance, it was on a live album that came out around that time, around ‘74. And it was later on ‘The Last Walls,’ which is just an amazing movie and an amazing event.

And anyway, just one of those songs that ever so often one just strikes right through to you. And I also felt a strong connection with you when I heard that because I knew you lived in Woodstock and you knew the band. You probably knew Morrison, did you?

Gillmor: No, I met him once, but I never knew him.

Searls: Yeah, it is not so important, but I read in Wikipedia for the first time the story of how the song came about. He was living in some house in Woodstock and heard the sound of a radio coming through kind of loud and clear, which is less interesting than how I had imagined it, which is that it speaks to that, but that makes it totally transcended medium.

I was just talking a few minutes earlier to my old friend Jerry Sulven who lives here in Massachusetts. I met him in North Carolina, followed him to California actually and then followed him back here; a great great guy. He was telling me how he enjoyed listening to the Celtics game. He grew up I am sure as a Celtics fan here on the radio rather than on TV. He did see it a little bit on TV, but then he would listen to the end of it on the radio and how much better it was…

Gillmor: Havlicek stole the ball.

Searls: Yeah exactly, exactly. You kind of don’t want to see Havlicek now, you know [laughs]. You showed him a lot on TV and I kept thinking how much different you looked way back then, but so do I to say the least. Anyway, so…

Gillmor: So, this has been a real fucking nightmare for you, hasn’t it?

Searls: Yeah, it has been a fucking nightmare. I haven’t had food since a week ago tonight. I have had bags of IV drips. And you would think that you can starve like that, that you eat your own body, but instead the fluid filled my body until I felt like that is in the blog, the Michelin guy, I had looked like the Michelin guy, the difference being that being filled with fluid instead of filled with air; air would maybe even better, but then that is scary too.

Gillmor: So, how did that happen?

Searls: As I understand it, it’s not so much - it’s something called atelectasis. I could look it up. It’s something that’s like pre-collapsed lung or sort of collapsed lung. It’s where some of the air sacs kind of sag down from disuse and the accumulation of fluid in tissues.

And what is the danger of this is taking on a lot of fluid, and so it’s important to suck out of something called an incentive spirometer, which I do from time to time. When I suck on this thing - it’s a plastic deal - and when you suck in it elevates a loose plastic piston up to at least a 1500 milliliter level, and that is your inspired volume. But, what it does is it forces you to open up as much of your lung as possible and keep your lungs exercised.

That’s another reason why it’s important to walk around. But, the lung isn’t collapsed in the sense that, like say you have a breach of the wall of the chest. Sometimes, the lung can collapse because air gets in outside of it, and so your lung will collapse that way. In my case, it slightly collapsed because of this condition essentially, and the state that I was in.

Gillmor: You sound a lot better than you did yesterday. Can you do an impression of what you sounded like yesterday?

Searls: [laughs] No. What did I sound like? Like [gasps] “I got to go.” That’s pretty much it. Yeah, I was in horrible shape. I sound better right now than I actually am. I’m not this good.

Gillmor: Well, I guess, that’s not good then, right?

Searls: What I don’t want to look at is how much more work that I have to do to get better and how much more time it’ll take.

Gillmor: How long do you think it’ll take?

Searls: I think, it’ll take another two days before I can probably take in food. It’ll probably be another four or five days before I can leave the hospital, that’s my guess. I’m still probably here for another week, another week in this uncomfortable bed. But the help is good, and all that.

The lesson out of it is to… if you’re ever going to have an exploratory procedure of some sort, do your own reading on it and be hyper-informed about it, because doctors treat templates. There’s something that stands for you, but it’s as much like you as an outline in a police target practice thing. One in 20 people will get pancreatitis.

Well, I spent a week and a half being sick before this, and there was something kind of wrong already going on digestively. So, what are the odds then? They go up. Excuse me. The odds in my case were obviously were 100% I had to let the waves of pain go through there.

That’s what the pauses are about. So, yeah. That’s the thing. You’ve got to be your own best counsel. The interesting thing is that I signed something, I signed a consent form while I was on the table, already drugged. And the explanation of pancreatitis and the risks was cursory, to say the least, or the most.

I think, it was well intentioned and so forth, and the doctor made a calculated guess. But, the calculation was not against me, the calculation was against all patients. And I’m not all patients; I was one guy.

Gillmor: How would you be able to… I mean, people get in these in these situations because they’re not particularly in control. So, what would you…

Searls: Right, you’re not in control. You can get relatives or friends to get in control. Have somebody else who’s not only ready to read a great deal, but bring other doctors into it as well. Get second, third, and fourth opinions.

Gillmor: Have you done that now?

Searls: Mm-hmm. And they are, of course, all contradictory. But, a lot them are like that old, “I’d like a second opinion.” “Yes, and you’re ugly.” Right?

Gillmor: [laughs]

Searls: You get different opinions even out of the same doctor sometimes. And because this is a teaching hospital, even though they’re teaching, it’s part of Harvard’s system. Even though this is a great medical system, it’s a… I guess, I’ve probably seen 50 doctors so far. On rounds, and here’s the head resident of surgery, here’s the gastrological guy, here’s the pancreatic surgeon, here’s some other thing.

And they all have different things to say. The guy who’s… I think, it was the pancreatic surgeon who said, “So, here’s the thing, we’re not getting clear enough readings on how much piss you’re putting out, and it’s important to know how much fluid we’re putting in. We tell how much fluid to put in by how much is coming out. So, what we want to is catheterize you.”

“What does that mean?” And he told me, and I said, “So, you want to put my dick on a spit.” [laughs] And he said, “I haven’t heard that before.” I said, “Well, that’s how it seems to me, and we’re not going to do that.”

[laughter]

Searls: I said, “I’ve gone through enough diagnostic procedures where the consequences exceeded the benefit. And I’ll do this. I promise you I will piss often and well. And you get precise measurements from that, but I’m not going to go through that.”

Gillmor: So, your cost/benefit analysis was, “No fucking way.”

Searls: Exactly. And another doctor talked about how, in severe cases, if my case did become worse, patients go to ICU, the intensive care unit, where they are intubated. Well, that’s where they put a hose down your throat and knock you out and inflate and deflate you and run fluids through you and watch what happens.

I’ve seen this, and this was called the movie “Aliens II.” And I don’t want to be there. I mean, that’s the kind of thing that just makes me say, “You know what, I’ve been here 60 years and it’s been really swell. Give me 45. I’m over, I’m done with this. I don’t want to do that.”

Gillmor: Yeah, this is the impression of what you were like yesterday when we talked.

Searls: Yeah. Oh, I’d probably just finished talking to that guy. So, I’m learning a lot. Another thing I’m learning is that the medical care system is filled with proprietary stuff that doesn’t get along with other proprietary stuff, and stuff that is designed to be annoying for good reasons.

For example, there are these called “smart pumps” that regulate the flow of fluids into you. And when the fluids get low or there’s air in the line or some other small thing happens, it all of the sudden turns into a forklift backing up. It goes “BEEP BEEP BEEP BEEP BEEP BEEP.” Like that.

And it starts loud and gets louder. For the first two days here, I compared this place to Gitmo, because it’s like it was sleep deprivation torture. Never mind that they wake you up at 4:00 to stab you and get blood out of your arm and wake you up at 6:00 to go down for X-rays. But, that thing was just unbelievable annoying, and still is, actually. I’m surprised it hasn’t gone off during the time we’re sitting here.

Maybe, because my flow is lower now. They’ve got me down to a lower fluid flow. It’s a little more tolerant, or something like that. Anyway.

Gillmor: So, have you had any visits from any of the A-list?

Searls: [laughs] I’ve had visits so far from my son-in-law, from a bunch of people at Berkman, from Nick O’Malley. Good man. And let’s see. That’s it. You now what, I’ve not welcomed visits either. Let’s be fair about that.

I got some nice calls. I heard from you. Hugh had a very gracious call from Super Nova. That was nice; he’s a sweet guy. I remember when we shared a headphone talking to you for a Gillmor Gang in Copenhagen. Where I used to…

Gillmor: I know. I burned that headset after that.

Searls: [laughs] Yeah.

Gillmor: I didn’t know which one was which, so I burned it.

[laughter]

Searls: [coughs] Hold on. I was about to make a loud medical sound. Oh, wow.

Gillmor: This is why they invented podcasting.

Searls: Yeah. Yeah, exactly. Oh, man. Yeah, exactly. So, you can set up suspicious hacking coughs.

So, are you in a car or something?

Gillmor: Yeah, I’m on the way to a meeting, and just had a conversation with the News Gang about Cindy McCain being… somebody attacked a previous show for Francine Hardaway suggesting that Cindy McCain was a drug addict, or had been for a while.

Searls: [inaudible] interviewed John McCain.

Gillmor: John McCain’s wife.

Searls: Oh.

Gillmor: She was strung out on prescription drugs, and somebody on the website took offense to the notion, and that this was an outrageous smear. And basically, I pointed out that the only outrageous smear that I had seen was Cindy McCain questioning Michelle Obama’s patriotism.

Searls: Yeah.

Gillmor: Which evidently she’s been repeating for the last couple of days. I mean, for somebody who I’ve always considered her husband to be a really straight-up citizen, the amount of ugliness that’s starting to come out of that campaign really surprises me, I have to say.

Searls: Yeah. Well, you know, what, I’ve kind of enjoyed being away from politics. I think, McCain will do better than most… it’s sort of wishful thinking. I mean, right now a lot of Republicans are backing Obama, which doesn’t surprise me too much.

Gillmor: So, this is one of the advantages of pancreatitis, is that you’re able to stay away from politics.

Searls: Exactly. I’m able to stay away from everything. So, that’s all right.

Gillmor: You don’t recommend it though, however.

Searls: Don’t recommend what?

Gillmor: Pancreatitis.

Searls: No, I do not recommend pancreatitis. Take care of your pancreas. Knowing what I know about the pancreas now, I would never have had an ounce of alcohol.

Gillmor: Does that mean that you’re not going to have any in the future, or not for a while?

Searls: Yeah. No, I’m not. No way. It’s done.

Gillmor: Really?

Searls: I was never a drinker anyway. But, knowing what I know about myself now, it’s like, “EH-EH.” No. I don’t want to be back here. I don’t want to get that lesson again.

Gillmor: So, do you have a laptop that you use in bed?

Searls: I use it some. I’ve got to tell you, Steve, medical people are coming in and I’ve got to deal. So, yeah, I do have a laptop and I use it some.

Gillmor: Well, I’m sorry that you’re in pain, but I’m glad you got a chance to let people know that you’re going to come out of this.

Searls: Yeah. That I’m not 100% pathetic, just some. Just mostly, which is good.

Gillmor: All right. Well, we love you, talk to you later.

Searls: Thanks a lot, Steve. Bye.

Gillmor: Bye.

[music]

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