The privacy of patient zero
A close encounter with the SARS virus shaped a journalist’s attitude toward confidentiality
Twenty-one years ago, I was an international incident. It’s a story that comes with all the expected drama: worried loved ones, diplomatic intervention, hustling reporters, and a lonely and terrified foreigner. That would be me.
I wasn’t even supposed to be in India. My best friend and I had been traveling in China as tensions mounted around a mysterious new virus: severe acute respiratory syndrome, or SARS. Since we couldn’t read or speak Chinese, we relied on a few English-language news sites that we could access at internet cafes. The stories from Western journalists we read implied that SARS was deadly and that it wasn’t being taken seriously enough in East Asia. We didn’t know what to believe, but when a single cough in the airport sent everyone’s eyes darting, we knew it was time to go. We chose India because we could afford the flights and the visas.
The stars aligned poorly for me that next week. My friend and I decided to split up for a few days and meet in Agra. That’s how I found myself alone in Mumbai, running a fever and fueling the kind of panic that often accompanies issues of public health. I went to a private hospital, but my symptoms and travel history suggested I might have contracted SARS. The doctors were sympathetic but couldn’t treat me. Instead, they called a taxi to drive me to a government hospital.
It was April and Mumbai’s tropical climate combined with my creeping fever meant I was hot inside and out. My mind raced, but somehow my cortisol-addled brain found the wherewithal to stop at my hotel, check out of my room, and move my luggage to the hotel’s storage closet. (I mean, either this was going to take awhile, or I was going to die.) Most importantly, I called the local U.S. Consulate.
Illustrations by Xia Gordon
My fever kept rising. By the time I reached the public hospital, my body ached so much that it hurt to sit upright. The hospital had cleared out a room meant for dozens of patients, and there I was isolated. I spent three nights in various stages of sleep and sweat. Sometimes I’d awaken in the cavernous space with a stranger at my bedside dressed like the evil government scientists in E.T. There were doctors, nurses, public health officials — and this is probably a fever dream, but I swear someone introduced himself to me as the mayor of Mumbai.
I don’t remember much else from this time except that the Indian doctor treating me was attentive and kind. “You don’t have SARS,” he predicted with confidence and a reassuring smile. His was the only face I could see; everyone else was masked and shrouded in plastic. No doubt they were taking every precaution given that, rightly or wrongly, I had been publicly identified as patient zero. Members of the media pieced together my movements across Asia and reported every detail. After newspapers named the hotel I’d booked in Mumbai, the poor innkeeper, desperate to save his business, had the place fumigated. Back in the States, my mother’s answering machine was inundated with interview requests from television news.
All this had gone on without my knowledge: Not having access to a television or radio for three days, I hadn’t realized that I had become the news.
After all this, my doctor’s early assessment proved true: It turned out that all I had was the flu. Still, the health worker delivering a package entered my room dressed like a cling-wrap mummy. The U.S. Consulate had sent me a prepaid mobile phone and a letter requesting that I call as soon as possible. “Despite what you may have read in the papers,” they added, “we have been actively working on your case.”
I spoke with the consular officer assigned to my case. He’d been working tirelessly behind the scenes, speaking with my family, doctors, and public health officials. He told me that the U.S. government had sent a doctor to observe me while I’d been (mostly) sleeping and had blood drawn for lab testing to verify whether I had SARS. (Indian public health officials were also doing this work independently.) That may sound simple enough, but in April 2003 there wasn’t a test for SARS. The tests only identified the broader coronavirus — which could have been, but was not always, indicative of the SARS variety — and I had tested negative. Finally, the officer explained that I had two choices: leave India that day or spend another 10 days in quarantine. I was exhausted, afraid, and homesick. The answer was obvious.
I left the hospital in a consular caravan, in the third of five SUVs (or maybe it was the second of three — another fuzzy detail). The officer advised me to duck down on the seat to avoid the cameras. By that time, it had been several days since my last shower. I assume at least one of the photojournalists who followed us was able to get pictures. While standing in the hotel lobby, trying to recoup my luggage, it was impossible to miss the popping flashes on the other side of the windows. The consulate helped me get an airline ticket to leave India. To be clear, I paid for the ticket, but I needed an assist from the government, because when you have been identified in the news as the person who started a public health emergency, no one wants you to board their plane.
"Sometimes I’d awaken in the cavernous space with a stranger at my bedside dressed like the evil government scientists in E.T. "
It depends on which news stories you read, but I was either the first or second suspected case of SARS in India. Sharing information about public health is a vital purpose of the press, but it’s a very different experience when you’re at the center of that maelstrom. At least one news story reported that I was asthmatic. That’s not entirely true, but I did have asthma in my medical history, meaning reporters were probing hospital staff for private medical information and then publishing it. When I returned stateside to my mother’s house, I made the mistake of reading the comments accompanying online news stories. People called me selfish and spoiled for having brought SARS to India. Those comments stung, and I remember wanting to respond to them. In the end, I held back, turned off the computer, and focused on my life back in the United States.
Shortly thereafter, I started graduate school in journalism and struggled to reconcile the experience of being a news story with learning to be a news worker. Those online comments, from people presumably so far away, felt so near in memory. I cried in my faculty adviser’s office wondering: Who was I to put someone else in that line of fire? He acknowledged my experience and encouraged me to let it guide me in my work. It was probably a regular afternoon for him, but that meeting has shaped my work for two decades.
My heart broke in 2014 when American media released the names of people treated in Atlanta for Ebola. Did public health and safety require that we know their names? Would you want part of your medical history to be the first thing about you that popped up on Google?
In many ways, I escaped that fate simply because my story is 21 years old. Two key elements contributed to the fact that it’s largely excluded from my contemporary digital footprint. First, all English-language media mentions that I’ve encountered misspelled my name as the more-common “Rebecca.” The second — and this should give us all pause — is that while I assume there were pictures of me that likely ran in newsprint, those photos weren’t part of the online stories.
With the rise of facial recognition software and the rapid acceleration made possible by artificial intelligence, images and videos that we post are now just as searchable as a name. I think about the photos of me, bewildered and exhausted in a hotel lobby. An image in a newspaper — something that was once tossed away at the end of the day — is now a digital artifact discoverable by anyone with access to the internet. In my case, that would be part of my ostensibly private medical history.
This is not just about my story. It’s about the work of Rotary: mine and yours. During Rotary years 2013-22,43 percent of global grants fell under the disease prevention and treatment area of focus. That’s innumerable people who have shared some medical experience with Rotary members or projects funded by Rotary. Here at One Rotary Center in Evanston, Illinois, we want you to celebrate and share that impact. I ask, however, that you consider consent carefully when taking photographs or making videos of your clubs’ projects.
Many people willingly share their stories with us. In writing this, I’ve shared mine and removed the protection that previous misspellings afforded me. That’s the kind of partnership we strive for when reporting and documenting the work of Rotary members around the world. Rotary’s recording policy asks permission from everyone — or in the case of minors, a parent or guardian — to use their image. This is a herculean task when put into action. In the field, people working with Rotary gather hundreds of releases per story. They are then compiled into thick stacks of dog-eared documents and delivered to Evanston, where our Visual Media team pairs each signed release with a photograph of the subject. To ensure that no one is overlooked, the Heritage Communications team — which, among other things, manages Rotary’s digital assets — double-checks the work. After ensuring that every person in every image, including video footage, has a release, we use the visuals for Rotary’s websites, social channels, and promotional materials. I mention all the labor involved only because it points to the depth of commitment from Rotary to protect people’s privacy — and, for me, that kind of dedication comes from a very personal place.
While my story hasn’t lived online in perpetuity, I suppose it might now. I’m glad that it’s with my consent and in partnership with Rotary — which is exactly what we are all striving for.
Rebekah Raleigh is the creative director of visual media at Rotary International.
This story originally appeared in the May 2024 issue of Rotary magazine.