Nobel laureate discusses loss of arm to flesh-eating bacteria

Nobel laureate Eric Cornell and his wife, Celeste Landry, met with the media on April 12 to discuss his recovery from necrotizing fasciitis. Cornell is a research physicist and fellow at the National Institute of Standards and Technology, an adjoint professor of physics at the University of Colorado at Boulder, and a fellow of JILA, which is jointly operated by NIST and CU-Boulder.

Necrotizing fasciitis, caused by the bacteria that causes strep throat, is a serious illness that caused Cornell to be hospitalized at the end of October 2004. He was discharged from the hospital on Dec. 16, 2004, and has been undergoing rehabilitation and recovery since then.

Cornell and Carl Wieman, distinguished professor of physics at CU-Boulder, led a team of physicists that created the world’s first Bose-Einstein condensate in 1995. They were awarded the Nobel Prize in physics in 2001 for their creation of the new form of matter.

The following is a transcript of the event, which was held at the University of Colorado at Boulder.

Eric Cornell: Good morning. We thank the Denver area media for being respectful of our family’s privacy in our difficult times. Today, we are very happy to discuss with the media our experiences of the last few months. After today, however, we do not plan to make any further public comments about my illness. I will likely continue to remain available to discuss science or teaching or good books or baseball.

Here is a brief summary of what happened to me. On Oct. 24, 2004, I came down with what I thought were flu symptoms—fever and a sense of malaise. The next day, I developed an aching pain in my shoulder. The pain steadily got worse and on Oct. 27, I was referred to the emergency room at Boulder Community Hospital. There I was diagnosed with necrotizing fasciitis and I underwent operations to cut away infected flesh, including amputation of my left arm and shoulder. However, even so, the infection continued to spread and I was very near death.

In the afternoon of Oct. 28, I was airlifted to the Burn Intensive Care Unit at the University of Colorado Hospital in Denver. Two more operations removed more skin, muscle, and subcutaneous fat from large areas of my left torso.

Eventually, these wounds were covered up with skin grafts. I spent seven weeks at University Hospital, before returning home in mid-December. Since then, I have been undergoing rehabilitation and physical therapy with the help of home care nurses and therapists and as an outpatient at Kaiser Permanente. I will need to have my daily physical therapy for about another 12 months to ensure that my grafts continue to heal normally. I am back at work part-time and anticipate being able to work full-time again in a few months.

In late November, I emerged from a three-week coma to find myself breathing through a tracheotomy tube, lying in an intensive care unit, and most shocking, I was missing an arm and a shoulder. It seemed like a real catastrophe. I have since discovered that, in fact, losing an arm for me is more an inconvenience than a catastrophe. I have returned already to a very full life with my family and when my skin grafts are fully healed, I expect things will be more or less back to normal.

The physicians tell me I am very lucky to have survived this illness. I surely would not have survived had I not received wonderful medical care from a great many talented people. Celeste and I wish to thank the staff at Boulder Community Hospital and at the Burn ICU at University Hospital. These people saved my life. Thanks also to staff at the rehab unit at University Hospital and to my visiting nurses and therapists and to the good folks at Kaiser Permanente.

Our friends, neighbors, and family have stood by us with invaluable advice and support, including meals, house repairs, shopping, and so on. We are so very grateful. I thank my colleagues at CU and at NIST and my administrative assistant, who have covered my many professional responsibilities for me while I have been on sick leave. I thank the professors who are doing my teaching this semester and my students and post docs who have carried on my research so capably. My mother dropped everything to stay with us for two months and helped my wife and children through a very difficult time.

My wife, Celeste, took on each challenge as it came with unlimited energy, intelligence, and compassion. I owe her everything. Celeste and my daughters were, and are, my inspiration to live. The physicians tell me I am lucky to be alive, and I am much inclined to agree with them.

Celeste and I are happy to answer questions now.

Question: When you came out of that three-week coma and noticed that you no longer had the left arm and shoulder, it seemed like a real catastrophe; since then it seems more like an inconvenience. That’s just an incredible statement, that you lost an arm and now you consider it a mere inconvenience.

Eric: I should emphasize that I was right-handed before. And here it is.

Question: Still, it’s a pretty big deal. Could you just expand a little on this? When you came out of the coma and you realized you’d lost the left arm and shoulder, what was your reaction initially and how did you progress to the point where you could consider that an inconvenience?

Eric: I was very sorry to discover it was missing. When I first woke up I really didn’t appreciate that it was missing. There is a medical phenomenon known as phantom limb, where you feel that you still have an amputated limb even when you don’t. For the first few hours, I assumed it was somewhere underneath all of those bandages, but it wasn’t. In many ways, I was most disturbed to discover that I was so very sick when I woke up. It’s an unnerving experience to have a machine doing your breathing for you. But I was weaned off of the respirator and so on and I’m really not kidding when I say that it’s more of an inconvenience than a catastrophe. You have to try it to appreciate it. If you talk about “Well, I’ll fight you with one hand behind my back,” well, put one hand behind your back for a little while and then go around your daily life. I don’t know if you have the patience for the experience; but the first day is really going to be drag. You’re going to keep trying to bring that arm from around your back and I do too, or I did, too, for at least several days, weeks, or even months, try to move that arm to do things. But, you really get used to it and you’d be surprised how much you can do with one arm, and, okay, sometimes with your teeth, or squeeze things between your knees, things like that. It just turns out not to be that big of a deal. I’m really quite serious about that.

Question: So, you’ve been back in the lab. Tell us how long and what it has it been like and why you wanted to go back.

Eric: Well before I got sick I thought I had one of the best jobs in the world, you know to teach here at the university, to do research for the National Institute of Standards and Technology, to work with graduate students and undergraduates and postdocs. Who wouldn’t want to go back to a job like that? It’s been great. It’s been a little slow at first. I was nervous when I first started talking to my students because for a little while I lost my confidence, but I gained it back and they were happy to see me and I was very happy to see them. Things have been going great in the lab without me—I wonder about that a little bit. (laughter) But, they’ve been doing great without me. It was really fun to get back into it. Doing research is a very exciting thing to do. Teaching is a very exciting thing to do. I probably won’t be teaching again until, I think it will be next Spring semester. This fall I think I have off from teaching as well. But, I will be doing some teaching to younger students than I usually see. I will be giving a CU Wizards presentation in May. The students will be 10 instead of 20 years old, but I hope they will be as enthusiastic.

Question: Do you have any idea how you got this disease? Was it just bad luck?

Eric: It was certainly bad luck—inconvenience or catastrophe, it was definitely bad luck. No. Nobody knows. Usually when people get necrotizing fasciitis, there was some initial risk factor, like you’d been shot or in a car crash or recently given birth. There are a lot of things where you might be a risk factor for getting necrotizing fasciitis and I had none of those. I didn’t have a deep puncture wound in my affected arm. What almost certainly happened is that I must have had a little scratch or a cut there and had that scratch or cut exposed to the invasive form of the strep bacteria, but the original scratch or cut was never found, and it just wasn’t my lucky day, I guess.

Question: You got to be in a coma for the worst of it—for three weeks—but Celeste, you didn’t. How was that experience for you and for how long did you think Eric might die and when did you realize he was going to survive?

Celeste: We went to the emergency room Wednesday and he had his first surgery and then he had another surgery the following morning and then one that afternoon in Denver and then one Friday morning and everything was moving very fast. I didn’t have much time to think. I called family; I said “Show up here.” On Friday morning, after the fourth surgery, the surgeon came out and said that he thought they had gotten it all and that’s when I started to have hope. He was still in critical danger for a long time, but I came back home and tried to have a normal life with my kids after that.

Question: Just to clarify, what were the total number of surgeries?

Eric: That’s a question for Celeste. I missed most of this.

Celeste: He had four surgeries to take away the dead tissue. He had two skin grafts. He had the tracheotomy and I think they did that separately from the skin grafts and then they took that out—is that considered a surgery?.

Eric: At least eight.

Celeste: They did a little bedside surgery on him once when we were worried about a rash that developed in the hospital.

Question: So, at least 8?

Eric: Yes.

Question: What is your last memory before you got sick?

Eric: My last memory was when I was in the emergency room. They had not yet diagnosed the disease, so I wasn’t particularly worried. I wished they would give me something for the pain. I was actually more concerned about the baseball game. It was the fourth game of the World Series and it was showing on a little TV hanging from the ceiling in the emergency room, so that was what I was really focused on at the time. But then the lights went out. So that’s the last thing I remember for three weeks.

Question: How has this experience changed the both of you spiritually? I don’t know if that’s the right question to ask you.

Celeste: It makes us realize how tenuous life is and how much we should appreciate every moment and the people we love. Be kind to the people you love, you know.

Eric: That works for me.

Celeste: But we also know that life is getting back to normal when the things around the house that bug you about your spouse, bug you again about your spouse.

Eric: You never mentioned that. (laughter)

Question: Can you expand on that? (laughter)

Celeste: No.

Question: What’s the biggest challenge for you today in dealing with this?

Eric: The biggest challenge these days actually is not related to the missing arm, but to the skin grafts. Skin grafts are pretty good skin, but they are not as good as what they replaced and they take a long time to heal. While they heal, they try to shrink, so the grafts which cover much of this side of the body, when they shrink, they are trying to do this [demonstrates], so I have to spend a lot of time doing that [demonstrates] instead, stretching back against that. It’s boring, but necessary. So, my biggest challenge is the boredom of physical therapy.

Celeste: You should think of Eric as a double victim. He’s an amputee, but he’s also considered by the medical establishment as a burn victim because he has the skin grafts on the left side of his body.

Eric: It just happened to be a bug and not a fire that caused it.

Question: In your work you solve physics problems. What was it like for you to be the subject really now of this mysterious disease that for many is still baffling?

Eric: It’s interesting to be a professional scientist and to be the subject of treatment and study. You look at the physicians and nurses who are trying to understand what’s wrong with you and make you better and you look at them as colleagues, you know, and you try to avoid second guessing them because they know much more about medicine than you do. But you also sort of see the wheels turning in their heads as they’re trying to rule this out and rule that out, let’s do this test. It’s a lot like what I do in the lab, it just matters more, or at least it did to me at the time.

Question: Did you find yourself getting involved at all in the treatment?

Eric: Yes. They’d say, “Well, we think this is probably an allergy and not an infection.” I had some little rash, which was a very serious thing because a rash could have been a symptom of the disease coming back. So they had to understand what the rash was. They were discussing in a scientific way among themselves and I wanted to chime in, “Well, have you ruled this out, ruled this out.” It would have been fun in a way, in fact it was fun in a way, since I wasn’t able to do my own research during that time.

Question: Celeste, did you handle the situation with your daughters and a more current question for Dr. Cornell—what are you working on now?

Celeste: The best advice I got during this whole situation was from a friend of mine who was sick for some time. Her daughter went through the mother being sick and the daughter told us that we should make sure we spend a lot of time with the kids because they only had one parent. With the help of Eric’s mother, I was able to pick them up after school and spend the rest of the day with them and people brought us meals so I didn’t have to cook, so they got a lot of attention. I think they needed that and I think that was good.

Eric: What I’m doing now, you mean my research? I continue to work in the field of ultra-cold atoms at JILA, but I’m also moving into an experiment which is sort of on the edge between atomic physics, which is how I’m trained, and particle physics. I’m doing an experiment to study an up till now rather unknown property of a very humble particle, the electron. It’s also a very important particle and although it’s been studied to death, there turns out to be something about it, which is still unknown and which has implications for cosmology and particle physics and so on. I’m doing an experiment with cold molecules trapped in a little box, which turns out to be a good way to study the electrons which are inside the molecules.

Question: What are the names and ages of your daughters?

Eric: Eliza, age 8, and Sophia, age 6, both Cornells. E L I Z A and S O P H I A, the Greek way, and not the Italian way.

Question: What are the implications for cosmology of these weird properties of the electrons?

Eric: I feel on much more comfortable ground now. (laughter) Okay, since you asked. There’s this thing in physics, which is known as the standard model. Up to now, most of the observations people have made in physics can be explained by a very codified set of observations. However, it’s known that the standard model can’t explain everything—it can’t explain what happened right after the “Big Bang,” it can’t explain something called “dark energy,” which doesn’t have to do with Lord Voldemort, but has to do with this fact that the universe doesn’t seem to be expanding as fast as it might otherwise. There’s a lot which can’t be explained by the so-called standard model and people who make theories that attempt to extend the standard model of physics find themselves … these same theories that maybe explain dark energy also make predictions and say, “Oh, the electron, which we think of as being this very symmetrical little particle, looks the same in the mirror as it does on the outside of the mirror, is not really symmetrical. All of us aren’t really symmetrical. If you ever look at yourself in the mirror and then look at a picture of yourself, which is not flipped over, you’ll notice that the two sides of your face are not exactly the same.

Celeste: You are one to talk. (laughter)

Eric: I look at myself in the mirror and I seem to be missing a right arm! (laughter) Good one. Electrons may also not be the same in the mirror and that’s really what the purpose of this experiment is, is to test these theories that explain things about the cosmology, but also make more down-to-earth predictions about simple particles like electrons.

Question: You talk about what you’ve been through kind of matter of factly. You’ve had a lot of time to think, being off work for so long. Do you ever just think about how lucky you are to be here today?

Eric: Every single day. Every single day I think that. People will come up to me and say “You’ve been through so much. What a horrible catastrophe. I’m so sorry,” and I say “I won the lottery.” Most people in my situation would have died. I got a really lucky break and I’m trying to take advantage of it. It’s a great thing.

Question: Do you laugh a lot more?

Eric: Oh yes. I’ve been in a remarkably good mood these days.

Celeste: Before this happened, we would talk about how our life was good. Our life is still good.

Question: You’ve retained your sense of humor and seem upbeat. Is there something about your personality, your outlook on life, that you tend to be an optimistic person, that you think helped you get through this where others would have been devastated by it?

Celeste: I wouldn’t have married him if he wasn’t.

Question: Do you think there was something in your personality that allowed you to get through this better than others might have?

Eric: I can’t say about other people. I know that I am a very optimistic person and a cheerful person and my cup is half full. Actually, much more than half full. I’m sure that that does help.

Question: A little detail. Of those three weeks in a coma, how much was caused by the infection and how much was medically induced?

Celeste: When you go into surgery, they put you under anesthesia and they kept him unconscious until they thought it was wise to take Eric out of unconsciousness.

Question: So it was mostly medically induced?

Celeste: All of it, I think. I think your body wants to shut down when there’s pain, so that’s part of it, but I would say it was basically all was medically induced.

Eric: I think before my first surgery, my blood pressure was going down. I think it’s called septic shock, and under those circumstances you tend to be unconscious anyway. What I’m told by people who were there in the room for the first two weeks was that I actually didn’t miss that much that I really wanted to catch.

Question: You describe losing your arm as an inconvenience. What has been most difficult of these last few months?

Celeste: I have to do all the driving at the moment. (laughter)

Eric: Before, I was the family driver. I actually plan to go back to that. Our car has been modified and tomorrow I’m going to the DMV to take a driving test to allow me to use this modified car. I’ve gone out with a driving instructor with the modified car. I have to say that about half the people in the state of Colorado are driving around with one hand—not exactly behind their back, but glued to their ear. (laughter) So I feel that driving with one hand with a modified car, I should be at least as safe as they are.

Question: But that’s not what’s been most difficult?

Eric: The most difficult part for me, there was about a week after I woke up in the intensive care unit that was a very difficult time. I won’t go into the medical details, but it was pretty unpleasant. It was tough, but as I say I had good reasons to live.

Question: But emotionally?

Eric: That was the emotionally difficult time, too. I was thinking that maybe I’d still die. I was not able to talk to my children when they came to visit me and I couldn’t talk to them. That was very difficult.

Question: Has it been hard to let people do things for you, too, because you’re you know, you’re “Eric Cornell, Nobel Prize winner”?

Eric: It was a big point for me when I was able to tie my own shoes. I worked at that pretty hard. I don’t really want people to have to tie my shoes. But if you know those little things that salad dressings come in the restaurants, little plastic tubs, if someone wants to open that for me I can live with that. I won’t be offended.

Question: What was it like waking up after three weeks and catching up on what happened in the world? Did you care?

Eric: Yeah. I didn’t care as much as I might have. I didn’t know who had won the World Series. I didn’t know who had been elected president. I didn’t know Yasser Arafat had died. I mean a lot of things happened in those three weeks and the first day or two I was awake, my memory wasn’t too good because I was still heavily sedated. Celeste had to work me through the sequence of events a few times.

Question: You were a billiards player (probably still are), cyclist, very active person outside of work, and then just the adjustments you see yourself making at work, I assume you’re typing with one hand, for example, at work. Are you looking at new hobbies? Are you looking at getting a recumbent bike?

Eric: Yeah. The recumbent bike, I think is going to be great. You can get a modified bicyle with both the brakes on one side but when you squeeze the brakes you come forward on to just one handlebar. You’ll flip over. So I’m looking into getting a recumbent bicycle. I think I’m still going to be able to shoot pool. In fact, I’m planning to get this prosthetic arm with a little attachment for it. I’ll go to the bar, the bets will go down, then I’ll put on the arm. (laughter) I could really supplement my income that way.

At work I’ve been experimenting with voice recognition software, which turns out to be much better than it used to be even a few years ago. I tried it just because my hands were getting tired. Now, it’s much more important because it’s a lot of stress on the remaining hand and I don’t want to use it up on the keyboard. I’ll probably be doing most of my writing using voice recognition software. I sent an email to my students shortly after I got out of the hospital before I went back to work and I said you know if I had lost a leg, then I would have had trouble kicking butt. As it is, I hope you’re all still working hard. (laughter). They appreciated that I was teasing them.

Question: Can you talk a little more about Carl and your other colleagues and what kind of support they have given you?

Eric: They’ve been tremendously helpful. Professor John Bohn, Professor Debbie Jin, have teamed up to cover the class I was supposed to be teaching right now. Carl Wieman and Debbie Jin during the time when I was really out of touch went in to visit my students and just talked to them and made sure they weren’t getting stuck on something that a more experienced person could help them through. My administrative assistant, Pam Leland, a lot of things come in, I get requests to write letter of recommendations for former students and so on, and she managed to handle a huge amount of stuff like that. A lot of people did a lot of work to sort of keep the Cornell research enterprises afloat and I’m very, very grateful for that.

Question: Were you joking with me about the prosthetic arm or are you going to get one?

Eric: I am going to get a prosthetic arm and it is possible to get an attachment on one that you can put down on the pool table, it is a little sort groove and it basically replaces your left hand bridge.

Question: You’re serious about that?

Eric: Whether I would get the attachment for that? Well, I was joking about the bets. You know that’s illegal. (laughter) I’m sure I would never make a bet in a bar. I absolutely was joking about that, yes. But I will get a prosthetic arm, or at least I’m going to be fit for one. Prosthetic arms in general are less useful than prosthetic legs. Many people have prosthetic legs. You may not even realize it. They just seem to be limping a little. What arms have to do is more difficult than what legs have to do. If you have one arm, I’m told, I’ve talked to a great many people who have lost an arm and most of them say a prosthetic arm can be useful sometimes, but it’s not the work horse of your upper extremities.

Question: Before you went to surgery, did you have any idea you were going into surgery and what was wrong with you and, Celeste, did you know that his arm was going to be amputated in that surgery?

Celeste: It was the second surgery where they amputated the arm. They did many, many tests and then the idea of necrotizing fasciitis came up and they cut into the skin to see if that was it. That was the first surgery.

Eric: In the time that I can remember I don’t remember even knowing that I was going into surgery. What I really remember was feeling bad, feeling that my arm was hurting, wishing they’d figure out what it was and particularly wishing that they would give me some pain medicine because my arm really hurt. They didn’t want to do that because they wanted to diagnose the problem, of course, I’m happy they diagnosed the problem. So, I wasn’t particularly alarmed lying in the emergency room. That I can remember. I was just thinking, let’s get on with this.

Question: Do you have any phantom pain or sensations now?

Eric: Yeah, I have both of those. She asked about phantom sensation. Phantom sensation is the experience that almost all amputees have, that if you close your eyes it really feels as if that missing limb is still there. When I close my eyes, I would say that my left arm feels at least as real to me as my right arm does and that’s quite standard. My arm feels like it’s like this [motions with right arm]. Kind of behind my back. I can’t move it. Well, of course I can’t move it. It seems to be frozen. Sometimes I have a more disturbing thing, which is phantom pain, and I take some medication for that.

Moderator: We’ve gone over our time. We have time for just a couple more questions.

Question: Talking about inconvenience of daily life, are there any things in the lab that you might have to modify besides typing or in your physics research that you will have to change, that might be challenging? I don’t know if you’re now at the point where all you do is type in grants. Are there things that you might change, or do different?

Eric: There is machinery that I can’t operate anymore. I wouldn’t want to use a lathe with one hand, or a milling machine, or for that matter it’s difficult to make the very fine adjustments on a laser if you’re not able to use two hands at a time. It has to be said that it’s been a little while since I’ve done very many fine adjustments on a laser. I usually offer what I like to think of as helpful advice to my students about how they might make fine adjustments on the laser and as you can see I’m as much as a motor mouth as ever. That hasn’t changed. So, scientifically it hasn’t been a big change. I’m sort of looking forward to my first scientific conference, which will be in a few weeks, to go and meet my scientific pals from around the world again.

Question: Which meeting is that?

Eric: It’s the Gordon conference in New Hampshire. I’m actually the chair of that conference. It’s on atomic physics.

Moderator: One more.

Question: Was it Strep A that was the source of the infection?

Celeste: It happened. After it happened. We’re looking forward. Eric’s going to get better.

Eric: That’s usually the cause of necrotizing faciitis. Presumably they did pathology.

Celeste: The doctors know.

Question: You don’t know for sure what it was?

Eric: Somebody does. I didn’t happen to pay attention to that detail.

Celeste: It was Strep bacteria.

Eric: That’s the usual cause.

Moderator: Thank you. Appreciate you coming today.



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