A Loud Suit of Armor, by Misha Angrist

Originally posted on Flaming Hydra.

He is 6’3” in cowboy boots, sporting large glasses, a full head of gray hair with a hint of the old David Lynch pompadour, and an uncharacteristically understated silver blazer. We are sitting in his office in the nondescript clinic at Duke University where he works (“kind of a dump,” he says; he dreams of a new one). Behind him is an X-Files poster of a flying saucer that says I WANT TO BELIEVE.

A Loud Suit of Armor https://flaminghydra.com/a-loud-suit-of-armor/ 1 of 13 7/9/25, 8:01 PM Bedlack understands the despair, but he’s not going to give in to it. There is no time for that. He is a highly decorated neuroscientist, Duke University’s Stewart, Hughes and Wendt Distinguished Professor of Neurology and Neuromuscular Disease; a clinical trialist and patient advocate; a teacher; a spouse; and, not least, a very sharply-dressed man. But if he were to design his own business card, it might include just two words: Hope Booster.

Bedlack directs the Amyotrophic Lateral Sclerosis Clinic at Duke. The ALS bullet points are grim: it is a progressive motor neurone disease in most patients, with muscle weakness leading to wasting and paralysis, and eventually loss of speech, swallowing, and breathing. Life expectancy is typically two to five years after diagnosis. There are about 30,000 people living with ALS in the U.S.; Bedlack and his team take care of 550 of them, a few of whom appear with him in Stitching Strength, a documentary directed by Nate Glass, currently making the rounds of community screenings. Glass and Bedlack are looking for wider distribution and a streamer.

The film is a 37-minute testimonial to his unorthodox, evidence-based, but style-driven and hope-infused approach to medicine, and to the resilience of his patients. We recently sat down to talk about the documentary and what inspired it.

This interview has been lightly edited for clarity and length.

Misha Angrist: In the film you describe the first time you saw an ALS patient as a clinician and how dispiriting it was.

Rick Bedlack: I was a resident. You’re trailing after an attending physician; you assume that they know everything and you’re trying to soak up as much as you can from watching them in action. And so to see this poor young guy with ALS and his family, to hear their story, to see the incredible collection of exam findings, and then to have the attending come in and say, “This is what it’s called and there’s nothing we can do. You just have to go home and get your affairs in order.” And then basically just walk out. It was pretty stunning.

MA: Is that experience what set you on a different path?

RB: I imagined that there might be a program for people with this disease because I saw how interesting it was, how terrible it was, and how little there seemed to be to offer patients. For the first couple of years, it was learning what evidence-based care looked like. I traveled around the country. I read everything I could get my hands on. I watched all of the experts at the bedside in action. And I kind of learned, like, what are we supposed to be measuring? Do we offer this medicine or that piece of equipment or this exercise or that nutritional intervention? I learned how to present the pros and cons of those things.

MA: And then you met another pivotal ALS family.

RB: There were three things in that room I’ll never forget. One, in a wheelchair was the youngest person I’d ever seen with ALS—he was around 20. He had familial ALS—multiple generations of ALS. Two, he was surrounded by the most people I’d ever seen jammed into one exam room, probably 15 people. And three, this was the wildest-looking bunch of people I’d ever seen on the Duke campus. It looked like they were going off to a punk rock concert— mohawks and piercings and tattoos everywhere. I was noticing that there was one tattoo that everybody in the room had in common—it was a black swallow. And the patient had a whole sleeve of them, but everybody in the room had at least one. And I said, “What’s up with these black swallow tattoos?” And he said, “Well, I told you about my mom—she died when I was really young. And for some reason, she had drawn a swallow on every page of this book. I don’t know what it was about, but when I got to be old enough to get a tattoo, I got every swallow from the book tattooed on my arm to remember my mom. And then when I got sick, we kind of knew what it was. Everybody I knew got one of these swallows from my arm tattooed on their body. And it’s kind of a sign of solidarity. We call ourselves the Often-Awesome Army, and we’re always going to come together, and we’re going to keep this positive and hopeful.”

I had never heard anybody react to an ALS diagnosis that way. But they did [stay positive]. His family just buoyed him in a way that I had not seen before. And so toward the end of his life, I went to visit him, and I said, “You’ve taught me something I never want to forget about the importance of hope. I want to be part of your army. So…can I get one of the tattoos?” I got one on my wrist.

We used to physically sign charts, and it would pop out of my sleeve, and it would remind me of that guy. And the fact that not everyone has an army like that means that sometimes I’m going to have to be that army.

MA: But it’s not just woo-woo hope in a vacuum. You study alternative therapies as well as rare cases of ALS reversal where people with documented ALS actually recovered some muscle function. What led you to those?

RB: ALS Untangled is a program that systematically investigates alternative and off-label treatments, things that people with this disease are thinking of buying and trying, things they usually find on the internet. When I first proposed this at a meeting 16 years ago, I remember some of the biggest names in ALS saying, “This is a terrible idea, because all you’re going to do is drag these things out into the spotlight, and the people selling them are going to say, ‘Bedlack at Duke is investigating this.’ It’s going to give these things credibility that they should not have.” And I said, “Well, I feel like right now patients have nobody willing to talk about this stuff. The only people talking about it are the ones who are selling it.”

I would much rather have patients self-experimenting with me as a partner than just going off on their own. I would say that the vast majority of my colleagues have come around.

As for ALS reversals, they have been in the literature since the 1960s, but I think I’m the first one to really talk about them, put them together as a group and try to study them. And I heard from patients who said, “You know, I asked my doctor and they said there’s no such thing as an ALS reversal. It’s impossible.” Well, now we have a couple of medicines designed specifically for genetic subtypes of ALS. And guess what? Some of those patients are recovering significant amounts of lost function. There have even been reports of people who were wheelchair bound who walk now. Those are ALS reversals. And now you see a lot of these people who were skeptical saying “Wow, I guess this really can happen, like if we target the right biology.”

I don’t know why the 62 people with reversals in my database got better, but at least now I think the community understands that people can get better if something turns off the parts of the body that are killing the motor neurons. If that happens spontaneously, if that happens by some combination of alternative therapies, whatever it is, it’s possible that people can recover from ALS.

MA: So when you go to neurology meetings now, do you feel like peddling hope is less taboo?

RB: I actually don’t. I still feel like some of my colleagues maybe look at this and say, “I wonder if he’s like promoting false hope.” There’s concern that embracing hope will impair a terminally ill patient’s ability to make difficult decisions about goals of care and things like that. And I do believe that false hope exists: I see it in people who are willfully deceiving patients by telling them that such and such a treatment is making everyone better and there’s never been a single side effect. But that’s different from telling someone that you don’t know exactly how they’re going to do when they have ALS or that there’s a new experimental therapy that they can try and why you’re excited about it and that it might help some people a lot and that it might not help some at all. That’s not false hope—that’s just reality.

MA: So doctors resisting messages of hope—is that mostly a concern about overpromising and having patients wind up disappointed?

RB: I think this is something that’s taught. I remember when I was a resident, we had a patient who had a stroke and, you know, it was a big stroke and it didn’t look good and I said to the attending, “Aren’t there examples of people with strokes like this who do recover?” And he said there are, but they’re rare, and it’s important when you’re talking to the family the first day to do something called hanging crepe. I said, “What’s that?” He said that a long time ago, people used to have funerals in their houses and they would hang black crepe paper decorations as part of the funeral. His message was to always err on the side of being overly pessimistic because then you can’t go wrong. So it’s partly what you’re taught—the conversations you’ve heard, those are the ones you mirror. But it’s also physician burnout, the loss of empathy, the loss of humor, the lack of time with people. I’m not saying any doctor is a bad doctor—we’re all trying our best. But I’m hoping that this movie shows that there’s another way.

MA: Which brings us to your sartorial splendor. In the film you talk about wearing crazy clothes as a nerdy kid to avoid getting beaten up—the bullies would get a load of what you were wearing and laugh and leave you alone. But then as a young physicianin- training your goal was to avoid calling attention to yourself altogether so you dressed conservatively. What brought you back to fashion?

RB: It starts with self-care. You have to understand what brings you joy. Don’t let the pace of medicine force things out of your life. I’ve heard doctors say, “I used to love to do this or I used to love to do that but I don’t do it anymore because I’m so busy.” I’m like, no, that’s making you a worse doctor by giving that up.

When I realized I needed to find a way to be more positive, to find a way to be a better hope booster, I said, “I gotta tap back into the clothes that brought me such joy when I was younger and just let loose. And I’ve never looked back. It’s just such an important tool for me.

MA: Of all of your dozens (hundreds?) of suits, is there a favorite?

RB: Oh my gosh. That’s a tough one! If I could, I would pick two. The first is my “Fashionably Fighting ALS” suit. I always had on my bucket list that I wanted to have a part in designing a suit. I didn’t know what the suit was going to be, but during the pandemic, like everybody else, I was going out of my mind. The first thing was to figure out who I wanted to make it. So I started searching different kinds of suits, different tailors. I came across this style of suit called the Nudie suit, after the designer Nudie Cohn, which is a suit that’s embroidered and covered in rhinestones; typically the symbols on the suit are Western symbols.

MA: Gram Parsons.

RB: Yeah, Gram Parsons. You go to the Grand Ole Opry and you see a lot of the old singers with these suits. And so I said, okay, now, who’s still making these suits? Well, I saw one on Post Malone at an awards show, and I said, wow, who made his suit? Well, turns out it was this guy Jerry Atwood at Union Western in Indianapolis. I reached out to him. I said, “This is who I am. I’ve got this crazy idea. I want to make a suit that’s covered in symbols of lessons I’ve learned from people at ALS.” And he got right back to me. He’s like, “Let’s do it, man.” I told him about not taking little things for granted, healing spiritually rather than physically—you know, resilience, hope, thinking outside the box. And we went back and forth by email, with fabric samples coming in the mail. He had my wife measure me so that we had some rough idea of what the suit would be. I had to make one trip out there for him to do the final alterations. That’s my “Fashionably Fighting ALS” suit.

MA: What’s the other one?

RB: It’s by the greatest living tailor, Manuel Cuevas [ed. note: Cuevas was once married to Nudie Cohn’s daughter, Barbara]. Several years ago, just on a whim, I said to my wife, I’m going to go see if I can find this guy. He’s supposedly in Nashville somewhere. He’d have to be 90 years old. He’s the guy who put Johnny Cash in black; he made Elvis’s gold lamé suits. He’s tailored for Bowie, Elton John, Bob Dylan, Lady Gaga. I thought, you know, maybe he’s still around, or someone in his family is. Well, I found his shop, went in, and there he was. And I said, can I sit down for a few minutes? He goes, “Of course!” He pulled up a chair and poured a couple shots of tequila. And he looked at me and he said, “Now what band are you in?” I said, “Sir, you’re never going to believe it, but I’m not in a band. I’m actually a doctor. And I take care of people with a disease called ALS.”

And his jaw just dropped. And he said, “Did you know my wife died from ALS?” I did not. He told me it was a tough journey—no options, no hope. And I said, “Well, let me tell you what I’m trying to do that’s different, and how it starts with what I put on in the morning.” He kind of got this big smile on his face, knocked back his tequila, and then he said, “Stand over here.” He put me in front of this big mirror, and I just got goosebumps, because I was thinking of all the rock stars who had stood there. And he measured me. And he said, “I’m going to make some things for you to wear for your patients. I don’t know what they’re going to be. I don’t know when they’re going to be done. So don’t call me and bother me. I will call you when they’re done.”

It was about six months later. I get this call. “It’s Manuel. It’s ready. Come to Nashville.” So I was like, “Okay, I’ll be there tomorrow.” Clear my schedule, man. Manuel Cuevas is calling! I’ve got to go to Nashville! And he made me this beautiful purple jacket (my favorite color), covered in symbols of all these families that he had read about who had helped me [by supporting the clinic].

We’ve become friends now. I’ve stayed with him a couple times. I just love watching him work. His mind is so interesting, how he comes up with these ideas for people. Sometimes people go and they tell him they want a very specific thing. Somebody will come in and say, “I want to look like Elvis.” He’ll look at them and say, “No jacket I can make is going to help you.”

But if you just went in and gave him some idea of who you were and what emotion you were trying to evoke, he would come up with something much cooler than what you could come up with. He’s 92 and still going strong.

Rick Bedlack and Manuel Cuevas; Bedlack wears the purple jacket tailored by Cuevas

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