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You volunteered to go to Sierra Leone to care for patients in the Ebola Treatment Unit in Kenema. Why did you do that?
My motives were mixed. Certainly, I was well-trained for the task, I was in Africa already, working in Uganda when I heard of the unfolding tragedy, and I wanted to go help. I was born in Africa, though I’m a naturalised American citizen, so I’d say there was also an emotional component to it. But I will say that when I decided that I should go, my ideas about what it would entail were quite naive and abstract.

What was day-to-day life in the Ebola unit like?
By definition, it is a difficult work environment. About half of your patients die, and . In most clinical settings, fatality rates far lower than those you find in the Ebola unit would be considered completely unacceptable. Caring for these patients while so many suffer and die is very hard. You may be at the bedside of a patient who has just died and then have to turn immediately to another bedside, to another patient who needs you. And then turn and do that again and again and again. It takes a toll on the head and the heart – but not turning is never an option.

The unit is also a very lonely place for patients. They are isolated, they can’t get up and walk around, and the only people around are caregivers in spacesuits. Caregivers, who in all likelihood, don’t speak their native language. It’s a tough place to be – and I had to work very hard to connect with patients and develop a therapeutic relationship with them.

What was your approach to connecting with your patients?
I used to write my name and draw funny cartoon faces on my protective suits in an attempt to bridge the gap. But it’s not the same as being face to face. One day, wearing just my scrubs, I walked over to the fence by an area where survivors were convalescing. Not one of them recognised me. I had spent hours and hours every day, with these patients. I felt incredibly connected to them. But because all they ever saw was a big white protective suit and my eyes, they didn’t know it was me. Once I spoke, though, they melted. All of a sudden, it was “Doctor Ian! Doctor Ian!” It was remarkable.

“I’m not the same guy I was before – in some ways I’m less, in some ways I’m more”

What was your reaction when you realised that you had somehow been infected?
I had seen the natural history of this infection play out many times in the isolation wards in Kenema – and many, many of my patients had died. So of course I was afraid. But I suppose I found some comfort in putting my doctor’s hat on. Taking that more detached view of my illness was a way for me to mitigate feelings of helplessness and vulnerability.

You showed symptoms of Ebola on 6 September 2014. Two days later you were on a plane to Emory University Hospital in Atlanta. What do you remember about that time?
On my way back to the States, I became delirious and confused. I don’t remember anything after I walked in the doors of the hospital until I woke up in late September. What I do know is that evacuation saved my life. I developed respiratory failure and needed ventilation. I developed kidney failure and needed dialysis. My brain failed in many senses – I developed encephalitis. I would have been dead in a week had I stayed in Kenema.

“The Ebola virus had squatted in my eye, virtually undetectable, for months”

Where are you in your recovery?
When I first woke up, I had to learn how to walk again. I had some problems with my cerebellum as well as significant muscle weakness, which resulted in problems with balance and muscle strength. But I’ve had other problems as well: terrible joint and muscle pains, and I’ve lost some hearing. I’ve struggled with short-term memory and had difficulty in finding my words. At first the focus was on getting stronger and regaining the 30 pounds of weight I had lost. But then I started having problems with my eye and that sort of derailed my physical therapy. I’m not the same guy I was before – in some ways I’m less, in some ways I’m more – but on the whole I’m doing well.

Let’s talk about your eyes. A few weeks after you left hospital, you started having vision problems, as well as pain and pressure, in your left eye. Tell me about that.
My doctors discovered that I had a remarkable amount of Ebola virus in my left eye. The idea that the virus could squat in my eye and be virtually undetectable for months was really surprising and absolutely fascinating. Eyes are immune-privileged sites, where tissues are protected from our own immune systems. Somehow the virus was able to hijack that area. My iris changed colour, from blue to green, for about three weeks.

Luckily, treatment with an experimental antiviral and a steroid injection helped clear the virus out of my eye. But we still don’t know why it was there. It may be that it was able to move to my eye because the acute illness was so severe. It’s going to be interesting from an immunological standpoint to understand what’s at play here.

Given your case – and others that show the virus can survive in the testes after it is undetectable in blood – how does that change our notion of what constitutes recovery from Ebola?
Since it was identified in 1976, we’ve thought of Ebola as a very acute and aggressive illness. You either die or survive, and once your blood is clear of the virus, we use the word cured. But, as we’re learning, cured is a misnomer. Before this outbreak, there was very little data on how long the virus stays in the body. Now we have a hint that it may be longer than we thought. We know that the virus can persist in immune-privileged sites like the testes and the eye. So we need to better understand this viral persistence in these sanctuary sites. The level of virus in my eye was higher than it ever was in my blood – and my blood levels were magnitudes higher than other US survivors. But I would like to stress the fact that, despite viable and active virus in my eye, my tears and any swabs on the outside of my eye were negative for the virus. This means there was no risk of transmission from casual contact.

You’ve not only gone from doctor to patient, but scientist to specimen, so to speak. Will that change the way you practise medicine?
I thought I understood the physical and emotional loneliness of being in an Ebola unit. But honestly I had no idea. I emerged with a renewed sense of what my patients have gone through and I don’t see how it couldn’t change the way that I practise medicine. I think of this phase of my life as a sort of dual-citizenship. Being both a doctor and a patient, especially when you are talking about something like Ebola, is kind of a bilingual role. I learned a lot personally – and I think that as a result I have a lot to contribute.

You’ve spoken elsewhere of having a sort of survivor’s guilt for having access to care that was unavailableto so many of your patients and colleagues in Sierra Leone. How do you feel now?
Survivor’s guilt isn’t the right term. I don’t want to call it that because I’m glad I survived. I would have died had I not been evacuated. So, on one hand, I’m extremely grateful to the World Health Organization, the US State Department, and particularly Emory University Hospital for taking such good care of me. But as a doctor, I am also haunted by the fact that my patients and some of my colleagues didn’t have that same treatment. That reflects some serious global inequities in healthcare – the same global inequities that underpin this outbreak.

What we need is modern medicine on the ground in West Africa. We need to make sure that we are prepared to do better next time. We’re approaching the end of this outbreak and we still don’t have one standard treatment that we know works. We have a lot of anecdotes but not much else.

What do you think is the best way forward?
As someone who was on the ground, I believe that, while the development of new drugs is important, we may have more to gain by paying attention to some relatively simple things. Most of the sickness and mortality in Ebola initially stems from severe losses through diarrhoea and vomiting. So if we can figure out how to deliver intensive support that centres on fluid replacement, we may do much more to change the course of the disease than any single antiviral drug. That said, a vaccine would change the game completely.

Press coverage of the Ebola outbreak has been likened to that of the AIDS crisis in the 1980s – overly sensational and, perhaps, ultimately unhelpful. What role do you see for the press in disease outbreaks?
Around the time I first woke up after being unconscious, Thomas Duncan died of Ebola in Dallas. He had flown from Liberia after becoming infected with the virus. I found the kind of dialogue going on around his death to be extremely frustrating. Much of the discussion was not based in science. So I decided that I wanted to stay off the radar for a while, and then hopefully later start a thoughtful conversation about the disease and my own experience. Some have called me anti-press because I played the artful dodger for those few months, but I’m really not. I believe the press has played an important role in bringing this epidemic to international attention. They help us remember that the world is interconnected. We all live, globally, in a small neighbourhood and you don’t have to be a good Samaritan to argue that taking care of our neighbours is a pragmatic thing to do. Because we will find ourselves in this situation again. It may be Ebola or flu or something completely new. But we will be here again.

“Taking care of our global neighbours is a pragmatic thing to do”

You recently returned to West Africa to interview fellow Ebola survivors in Liberia and learn more about post-Ebola syndrome. What did you find out?
We had a week there, and saw more than a hundred patients with eye symptoms. After what happened in my eye, and with doctors on the ground reporting similar symptoms in survivors in West Africa, it became clear there’s a new disease process emerging. We don’t know if all of those patients with eye problems have virus in the eye but we are learning that we need to be vigilant after someone leaves the Ebola unit. There is a short window, just months, to prevent people from going blind. And there are probably much bigger problems than just the eye. My own symptoms tell me that. There is a large portfolio of complications and there is probably going to be a spectrum of symptoms and disease severity in different survivors. So I don’t know if we can even call it post-Ebola syndrome because, as we’re learning, it can vary so much between individuals. But whatever it is, it’s showing us that survivors may need care for years.

With hindsight, would you still have made the decision to go to Sierra Leone?
Most people are afraid to ask me that question. I’d answer it this way: I would never have chosen my experience as an outcome – in many ways, I wish it had all never happened. I’m frustrated by the ways in which my life has changed: I have an MRI full of holes, reflecting areas of my brain that have clearly been damaged, I can’t run any more, and I get tired very easily. But it was a remarkable privilege to be on the ground, working with that particular group of people, to help those patients. I learned so much from my colleagues, and I will never forget the heroism I witnessed on a daily basis. The chance to be involved with that – though ultimately it was a rather tragic drama – changed my life in many positive ways long before I got sick.

This article appeared in print under the headline “I would have been dead in a week”