While volunteering for the Peace Corps in Ukraine in 2010, I contracted a severe version of drug-resistant tuberculosis. Two years of painful, isolating treatment taught me the vital role social media may play in finally eradicating this disease.
One of the loneliest nights of my life was when I masturbated for an Australian stranger on the only webcam chat site that would load on the shitty hospital Wi-Fi. He didn’t want to show his face on camera, and I didn’t care whether it was because he was famous, married, or ugly. The internet was so slow that the sound stalled, so the dirty talk had to be typed.
It was a terse, space-economizing raunch, pounded out letter by letter with his left index finger, since his dominant hand was busy. I WANT TO VERB YOUR NOUN. But the artlessness was a relief. The more work it took to type, the less likely he’d waste time asking about my hospital bed and IV rack. If I didn’t mind him being headless and talking like a filthy grown-up “see spot run,” couldn’t he handle a naked stranger in a tuberculosis sanatorium?
Nor did he mention the armband, which hid the nozzle nurses screwed to dripping sacks of drugs during infusions. Three times a week, amikacin seeped down the skinny 2-foot-long tube inside and up my arm, leading behind my collarbone to splash into a big fat artery over my heart.
Just please don’t fucking ask, I thought. It was exhausting to explain. Screw this guy. Wouldn’t it be weirder if he had inferred a medical emergency, but resolved not to let it ruin his hard-on? Do virtual strangers without heads even have cognition? What the hell was wrong with this guy’s face, anyway?
Who cares? I had been in that room in Denver for almost a month. I was days away from lung surgery to remove my upper right lobe, where the bulk of the disease was headquartered. This was the last goddamned time I’d ever get to show my tits to a stranger without any scars. And it was the skinniest I’d ever been.
I had contracted extensively drug-resistant tuberculosis, or XDR-TB (a severe version of multidrug-resistant, or MDR tuberculosis), while serving as a Peace Corps volunteer in Ukraine. The National Jewish Health Center is no longer a sanatorium, but it is still one of the country’s top TB research facilities, staffed by worldwide mycobacteria experts and equipped with properly ventilated rooms for the infrequent consumptives who turn up there.
When I was admitted to the hospital, the state of Colorado dispatched a guy to my hospital room to read me my legal quarantine order. I’d be in isolation for however long I was contagious.
During my stay, I started a two-year course of harsh antibiotics, including an IV drip. I had two surgeries, which flanked a blood transfusion and peskily recollapsing lung. I lost 12 pounds and half my blood, which have been replaced, and the upper lobe of my right lung, which hasn’t. I wish I could be more inspiring. But I didn’t use that time to write a novel, learn yoga, or even plow through a beach read. Falling into a trance and getting off strangers was all I felt capable of.
Objectifying? Sure. So is being sick.
Such isolation — both physical and emotional — takes a serious toll on TB patients. From the 18th century glory days up to the modern rise of MDR, tuberculosis went from being a relatively universal human experience to being a profoundly lonely one. Isolation and stigma make long treatments even harder to endure and inhibit public consciousness that could lead to more meaningful progress. But we may be approaching a new historical moment: Social media makes it easier than ever for patients to find and support one another. These connections can improve patient morale and treatment outcomes and ultimately raise the profile of MDR-TB in global health policy.
Because I was never as alone as I thought: Five thousand miles away in Siberia, a woman my age named Ksenia Shchenina was also suffering. So are patients in dozens of other countries, and more and more of them are beginning to use the internet to combat the solitude that has long not only defined the disease and its treatment, but kept it from being eradicated for good.
Most people don’t spend much time thinking about tuberculosis. If pressed, they might make a few basic generalizations. It was a very serious disease in the olden days. It killed your great-great-grandfather, all of the Brontës, and Nicole Kidman’s character in Moulin Rouge. But then it was cured. It doesn’t exist anymore. So we’ll all just have to get Ewan McGregor’s attention some other way and die of something else.
Tuberculosis has been on the scene since ancient times, but it only reached menace status in filthy, urbanizing mid-17th century Europe. It went on to dominate the continent’s “cause of death” list for over two centuries. This makes sense, if you know how germs work. Poverty and bad sanitation — e.g., the Industrial Revolution’s toxic work conditions and shantytowns — made toppling immune systems a cinch. Before germ theory caught on, some people even saw TB as a sort of moral retribution for the sins of modernity.
Even the disease’s classic name — consumption — implied a physical and spiritual connection. It consumed you; it devoured you from within. Before the scientific consensus on how an infectious disease was transmitted, many people assumed a person could be predisposed to consumption. (They caught on to genetics before they unraveled epidemiology.) An entire family of consumptives probably meant they were ill because they had all inherited the proper preconditions for the illness — not because they lived together and coughed fatal microbes into one another’s food. Similarly, researchers couldn’t help but notice that consumption disproportionately seized writers and artists, whose lifestyle was practically synonymous with urban poverty. But when it was still assumed that the disease grew from within, many scientists searched for a link between consumption and genius. This is the kind of factoid that makes you feel smug when modern doctors are really, really surprised that you got this.
The jig was up in 1882. A German bacteriologist named Robert Koch zeroed in on the Mycobacterium tuberculosis, the bacterial cause of consumption. It spread from person to person by air.
Koch’s early attempts to develop a vaccine failed, but his efforts did yield a valuable diagnostic tool: the tuberculin skin test. It’s a shot that scans for TB antibodies. If you’ve been exposed to the disease, the injection site on your forearm will flare up into a BRIGHT RED SKIN MOUNTAIN. The test is still part of routine checkups today among grade-schoolers, teachers, cops, and — as I would learn — Peace Corps volunteers.
There is a photo of me on Facebook from early 2010, lodged between a handful of party shots with fellow volunteers. We had traveled to Kiev from across Ukraine to make a weekend out of our mid-service medical checkups. I’m 23, hamming it up in melodramatic distress, and twisting my left elbow up over my head to show off the swollen red splotch on my forearm.
A positive skin test usually doesn’t mean you have TB — less than than 10% of people with positive skin tests ever develop an active case, because healthy immune systems can usually defeat the bacterial intruder. Several volunteers each year end up with the telltale red blotch; it was really nothing to worry about. We’d need a follow-up X-ray, but an active case was highly unlikely. So I cracked a few jokes and went back to pounding flat Chernigivske beers with my friends.
I had been in Ukraine since September 2008, after studying Russian in college. I volunteered at a school in an eastern mining town called Antratsyt. The town borrows its name from anthracite coal. The region is flat, but you can see hills in the distance — they’re “slag heaps,” or piles of debris extracted from mines. The town only runs water for a few hours a day to protect the mines from mudslides or collapse. But life wasn’t as bleak as it sounds. I had students who were so excited to practice their English that they would chat with me after school, perched in a row on the edge of a Soviet-era fountain long-since bone-dry. I struck up friendships with their parents and my fellow teachers. I toasted my colleagues over champagne and chocolate on Ukrainian holidays. One time, I even gave a thickly accented speech on international education at a school assembly that ended up on the TV news. I was happy.
My follow-up X-ray was two weeks later, in Kiev. Taking yet another 17-hour train trip felt like an epic hassle. Is there a word that means the opposite of hypochondriac? There should be, because that’s what I am. In hindsight, of course I had symptoms – I just wrote them off to other things. I had a bad cough, because I was a smoker at the time. I’d lost weight, because there was no American junk food to lose my will power around. I was run-down and sluggish, because it was the Ukrainian winter!
I got a ride with Dr. Sasha, one of the Peace Corps’ Ukrainian staffers, to my screening at a tuberculosis dispensary — tubdispensar — on the edge of the city. He spoke the sort of English that made me self-conscious about my Russian. He carried my Peace Corps medical history file on his lap. The most dramatic thing in it was an allergy to mangoes. (Not exactly a significant handicap in Ukraine.)
I was X-rayed in a machine that looked like an iron colossus. In the waiting room, I tried to distract myself with a biography of John Adams. (His son, John Quincy, spent years in the Russian Empire as Ambassador and managed to stay consumption-free.) Soviet-era medical facilities are much more dimly lit than their Walmart-bright American counterparts. To see the page, I had to squint.
The head TB doctor finally called me into the office. He explained the X-ray results and prognosis to Dr. Sasha, who relayed them in English to me. But when Dr. Sasha asked a follow-up question, they flipped back to Russian and cut me out of the triangle. My Russian was good – but not “unfamiliar medical jargon” good. But this wasn’t a conversation I could stand to be excluded from. I was on the brink of a tantrum.
“Goddamn it!” I wanted to shriek at the TB doc. “Don’t say it in his Russian. Say it in mine.”
My face must have looked like a cartoon teakettle. So he slowed down and turned toward the image pinned to the light board.
“Classic pulmonary TB,” he said to me. (Words like pulmonary and tuberculosis are cognates.) “It’s strange that it advanced so quickly. Especially for a healthy young girl.”
“Are you sure?” I asked. “I heard you guys muttering about bronchitis or pneumonia before. Could it be one of those?”
“No. We assumed it could have been at first, but this is a clear case. See, on an X-ray, healthy lungs should look solid black. See the contrast down by the lower ribs? But now look up on the right. See the [blahblahblah]? The [blahblahblah] is the tuberculosis.”
“I’m sorry. I didn’t get that word. What part is the tuberculosis?”
He sighed. It would have been easier to let Dr. Sasha translate. Now he had to dumb down his lexicon for a rattled American.
“Up there. Upper right. Well, left on here. That white spot? The part that looks like a ghost.”
That night, I started treatment in a studio apartment the Peace Corps rented for me in Kiev. My prognosis was good. For two weeks, I took pills, got X-rayed, and hocked up sputum — a polite word for loogies — into sterile plastic cups for lab work. One set stayed in Ukraine; the other was shipped according to special biohazard protocol to an American facility to better coordinate my care at home.
Eight weeks later, just as life was settling down back in Chicago, I was surprised to find an ominous number of missed calls on my phone: from the diagnostic lab, my mom, my American pulmonologist, my mom, the Cook County Department of Public Health, my mom, my mom, the Cook County Department of Public Health Epidemiology Unit, my mom, my mom, my mom, my mom, my mom.
Those loogies had yielded bad news. I had XDR-TB. The bad kind.
Effective immediately, I was placed under an isolation order. I was told to stay home whenever possible — I could go outside sparingly, but any other indoor space was off-limits until I was noninfectious. A few months, at least. The police could get involved if I didn’t comply.
A month into my quarantine, my Chicago doctors were stumped. They’d rarely seen anything like this.
So I set off on a journey not unlike those taken by consumptives a century before. I left my bustling, industrial Midwestern city and headed west, to the National Jewish Health Center in Denver.
It was the National Jewish Hospital for Consumptives back then. In 1899, the brand-new philanthropic institution was brimming with needy patients. In 2010, I was the only one.
I told almost no one where I was going. I had already been avoiding friends who tried to contact me. It is exhausting to have your life flipped around by something people know nothing about. You get so damn sick of telling the story. Weird caveats demand exposition. Here is what I have. Here is why it’s bad. Here is why I had to evacuate Ukraine and leave the Peace Corps early. Here is why I can’t be in public or see anyone for the foreseeable future. Here is why I am going to some hospital in Denver for a long time. Here is why they chopped off a big chunk of my lung. Here is why I have this IV armband thing for nine months. Here is why I puke a lot. Here is why food tastes all wrong. Here is why my hearing got warped. Here is why I can’t feel my toes. Here is why I am not supposed to drink any alcohol. Here is why I’m still going to anyway.
Since I was on the no-fly list, we drove the 15 hours by car. I wore a mask the whole time so I wouldn’t infect my parents.
Basic infection control, like isolating the sick and using protective gear to lower transmission risk, may seem primitive compared with modern medicine. But the truth is, public health measures like quarantine and mouth covering did more to eradicate tuberculosis than drugs did. We never did figure out a great way to cure TB; we just got better at preventing it. That is, until it caught up with us.
After Dr. Koch’s splashy 1882 debut of the Mycobacterium tuberculosis, the medical community was certain a surefire solution was close behind. But they were disappointed. No cure came.
Forty years later, a new vaccine — Bacillus Calmette-Guerin, or BCG — entered human testing. But BCG was never that good. Most researchers believe that adults are just as likely to wind up with TB whether they get BCG or not. It also suffered a major PR setback as the center of one of the worst vaccination disasters in history. In 1930, 73 babies died of tuberculosis meningitis after being injected with BCG in Lubeck, Germany. The vaccines had been contaminated after getting mixed up with a virulent live TB strain back at the lab. (Life hack: Always be sure your doctor has a label maker.)
It wasn’t until 1943 that a team at Rutgers University pinpointed streptomycin, the world’s first antibiotic effective against tuberculosis. TB’s staggering cultural legacy made the discovery a shoo-in for the Nobel Prize, but streptomycin was nonetheless terribly flawed. It was toxic, and patients quickly developed antibodies that resisted the drug. The only solution was to scrape around for more options and blitzkrieg every case of TB with several so-so drugs at once. The first-line regimen has hardly been tweaked in nearly 50 years. It was never a secret that such a long and tedious course of antibiotics would, like a Shakespearean hero, engineer its own demise.
But that hardly seemed to matter. By the time streptomycin ‘n’ friends showed up, barely anyone even needed them. Throughout the 20th century, people gradually stopped getting TB in the first place. We got healthier, cleaner, and smarter. We could contain disease and catch it early. It nearly disappeared.
Then, in the early 1990s, it bounced back. Two global crises — the rise of HIV/AIDS and the fall of the Soviet Union — helped resurrect the scourge of the 19th century. The World Health Organization declared a worldwide TB emergency in 1993. (It just goes to show: Don’t count your eradicated diseases before they hatch.)
AIDS was even harder on human bodies than the Industrial Revolution had been, and millions of centuries-won immune systems were suddenly wide open to infection anew. TB remains the leading cause of death among AIDS patients.
The collapse of the USSR spread TB in even more complicated ways. The year 1991 saw the traumatic birth of 15 brand-new post-Soviet republics. Each of these new countries was in economic and social turmoil. They were broke. They had no central government or public health system. Before their independence, everything had more or less filtered through Moscow. In some places, there were few to no supplies or institutional infrastructure, let alone money for health care workers. Alcoholism and malnourishment soared. People lost their savings. Rampant crime stuffed the prisons — notorious hotbeds of TB — to well over capacity. Released inmates carted these germs back to their communities. By the time the 15 new countries had smoothed things out, they already had a new old epidemic to battle.
Even as the immediate post-Soviet crisis improved, other factors played into treatment interruption and new infections. These have been beautifully documented by experts like Dr. Lee Reichman in his 2001 book Timebomb and are easily rattled off by every post-Soviet MDR expert I’ve come across. Treatment in prisons has been badly underfunded, so for years people didn’t get the meds they needed. There is often subpar follow-up for ill prisoners after they’re released. Infected migratory workers are tough to treat and track. The Soviet-era mentality of medical specialization has made the region slow to coordinate HIV and TB care. Both illnesses are also correlated with substance abuse, and addicts often turn out to be less-than-diligent patients. In sum, the long, hard treatment places economic, social, and physical strain on patients.
Antibiotic treatment is an all-or-nothing game. Patients need to take every dose by the book, or germs acquire resistance. Getting it done right depends on stupendous public health programs, not to mention stupendous patients. Once a strain does acquire resistance, it can’t be undone — and the stronger, harder-to-treat germ is passed on to others, like me. If the best drugs don’t work, doctors are forced to use drugs that are even harder on the body. All of these factors collude to paint a grim reality. In former Soviet countries, only around 60% of patients who begin tuberculosis treatment ever successfully finish it. The rest of them flee, slip through the cracks, fail to respond to treatment, or die before they are cured.
So it is no surprise that the region has the highest rates of MDR-TB in the world — as many as 30% of all newly detected cases are impervious to first-line drugs. (The global average is reportedly less than 5%, but statistics are widely believed to be low, especially in resource-poor countries. In the U.S., there were fewer than 100 cases of MDR in 2013.) Even in optimal conditions, the difference between a case of run-of-the-mill TB and MDR can be the difference between a moderate inconvenience and a life-threatening catastrophe. A standard case can be cured for less than $100 with a daily dose of four different drugs for six to nine months. My treatment cost taxpayers seven figures and lasted well over two years.
On paper, many of these problems have already been fixed. A decade ago, Tracy Kidder’s best-seller Mountains Beyond Mountains lauded the achievements of Dr. Paul Farmer’s Partners in Health and other global health organizations in revolutionizing worldwide MDR-TB care. The region’s TB programs are now relatively well-organized and padded with funding from global health mammoths like the Bill and Melinda Gates Foundation. There are detailed and standardized treatment guidelines. TB drugs are fully subsidized. So why are so many patients still failing their treatments?
Without an effective vaccine or better drugs, efforts to curb MDR-TB face a serious paradox. As a strain becomes more resistant, it becomes simultaneously more painful and more urgent to treat it. Many countries have responded by adopting stringent patient monitoring policies, which improve cure rates but are nonetheless no small imposition in patients’ lives. Public safety overrides patient agency, which is a tough pill for victims to swallow (and they’ve already got plenty of those to worry about).
During my treatment, I felt sick for two years. Nausea became my baseline. Sometimes the drugs make you puke, or give you the kind of diarrhea that makes you need a nap. One screws with your nervous system, and I permanently lost most of the feeling in my feet. I’ve tracked blood across kitchen floors because I can’t tell if I’ve stepped on shattered glass.
And I had it lucky. I had no comorbidities like HIV or diabetes, which make everything even worse. Being on amikacin cost me some low-frequency hearing, but it has caused deafness in others. And I got to take it by IV drip, instead of the painful upper-thigh injections that leave some patients too sore to sit up. And while cycloserine — a drug nicknamed “psychoserine” for its notorious mental and behavioral effects — makes some patients hallucinate and scream, I got away with confusion. I had trouble with reading, organization, and paperwork. It’s an especially tough break if you’re dealing with a workers’ comp claim for a medical disaster. I couldn’t keep it all straight, and walloped my credit.
Even worse, most patients in former Soviet countries and across the world get practically no social support during the crisis. They get little help with side effects, and suffer serious social and economic strain. Many of them have no way to make up for lost wages over the course of their treatments. Some even face lasting discrimination. In 2011, an undercover Ukrainian journalist wrote an exposé about being iced out by hiring managers after casually mentioning a past bout of TB.
The reason why boils down to one key factor: Tuberculosis remains highly stigmatized throughout the world. In the former Soviet Union, people associate it with painful memories of the lawless, chaotic ‘90s. Having it means you’re a crook, a junkie, a drunk, a bum, or a sewer rat.
Stigma makes epidemics worse — it gives people a reason not to be seen walking into a clearly labeled TB clinic to see a doctor when they should. Loneliness and despair can convince someone that health doesn’t matter, so why take these pills? And stigma shuts people up, so they’ll never organize, influence funding, or change minds about TB. Stigma means more stigma.
When patients are silenced and isolated from one another and their communities, it stymies progress against the disease. The WHO estimates more than a $1.3 billion worldwide funding gap in TB research and development, and the number threatens to grow. Even though investment in new drug research is one obvious way to improve treatment, AstraZeneca, Novartis, and Pfizer recently pulled a combined $50 million out of the fight. According to an email from the Treatment Action Group, a TB and HIV advocacy nonprofit, this steep loss amounts to a full third of private-sector TB investment since 2011.
Erasing stigma, combating TB’s chronic underfunding, and promoting new research and drug development are incredibly lofty goals. But similar barriers have been conquered before in diseases like breast cancer and HIV/AIDS, where passionate activism made incredible inroads in raising awareness and influencing policy. If former and current TB patients joined together, could they build the first real advocacy movement centered on patients?
Tuberculosis patients haven’t always felt so alone.
After leaving Denver, I read The Magic Mountain, Thomas Mann’s sprawling 1924 classic novel about a Swiss sanatorium. I forced myself to finish it, but it’s the most boring book I’ve ever read. It’s the story of a total wiener named Hans Castorp who goes on a trip to hang out in the Alps and visit his TB-stricken cousin. Then Hans ends up sticking around and living there for seven years even though he doesn’t really have tuberculosis, just so he can do stupid crap like spend 70 pages talking about the nature of consciousness.
Ugh, I’m still so mad at him. But maybe it’s because I’m a tiny bit jealous. So what if he’s a fake person with fake tuberculosis? It would have been so nice to have someone to be sick with.
Sanatoriums, like National Jewish and the one atop The Magic Mountain, bridged the gap between the mid-19th century and the 1940s discovery of streptomycin. With no cure in sight, the ill had long made do with an iffy array of treatment options. Some doctors stuffed people’s windpipes with vacuum contraptions to simulate lazy lung capillaries. Cottage industries of miracle cures gorged on ad space in periodicals, sandwiched among serial installments of now beloved classics. (If you liked Great Expectations, you’ll love Daffy & Son’s Natural Miracle Multi-Purpose Health Elixir! Available wherever fancy wool top hats and snuff boxes are sold!!!) But the White Plague seemed to beat them all.
Tuberculosis did have one semi-formidable opponent, though — one hope that physicians agreed on. It wasn’t a cure; it wasn’t a given. The idea came from an 1840 pamphlet written by Dr. George Bodington, a British family doctor who covered a large area by making his house calls on horseback. His essay was based on a simple observation: that consumptives in wide-open spaces fared better than those packed tightly in cities.
But Dr. Bodington drew a further conclusion: It must have been the country air that healed them. Their bodies need pure, unsoiled air, shared with as few people as possible. Depending on the severity of their case, they might need months or years of it. In the disease’s final stages, Mycobacterium tuberculosis finally chews through the lung tissue, resulting in the bloody cough that famously beckoned death (but, curiously, couldn’t stop the heroines of Les Misérables, La Bohème, and La Traviata from singing). If combated early with the right dose of air, the process could drag to a halt.
And where could patients find such magic air? The best stuff was nippy, clean, and thin. Way up high, where no one can spoil it with industrial factory smog. And so, for the next 100 years, sick city-dwellers left their crowded hubs by the thousands and set off for specialized tuberculosis hospitals in the mountains. These sanatoriums treated patients with Dr. Bodington’s “rest cure” — medical observation, a generous binge diet, and hours a day in rows of canopied outdoor beds. In The Magic Mountain, characters traveled to Switzerland from places like England, Italy, and Poland. For months or years at a time, consumptives at sanatoriums lived and breathed together far away from real life, in their own little communities up in the sky.
Denver — the Mile High City, full of its own magic mountains — thus became America’s magnet for the dying who wanted to live. In the late 19th century, nearly a third of Colorado’s population suffered from tuberculosis, after journeying west for the air that might save them. At the National Jewish Hospital for Consumptives, they slept two by two, tucked into each of its dozens of bunk beds.
By the time I showed up, the bunk beds were long gone. There were no pretty canopies or breezy napping patios. And all that oh-so-edifying “virgin air” stuff? Turned out to be bunk. The bump in survival rates among patients who spent all that time outdoors wasn’t because of the air; it was the sun. Vitamin D is good for the immune system. They could have gotten the same effect on the roof of a tenement house. Or by taking sunshine stuffed into Vitamin D pills, like I did, supplemented by the UV light in my hospital room. (In a 21st century American city, you don’t just let a case of active tuberculosis run around outside.) Other times, patients’ health improved simply because sanatoriums gave them a badly needed break from lives of poverty and labor.
Still, the sanatorium era continues to be considered a public health success. Not because sanatoriums ever did much to help “lungers.” But because they kept them away from healthy people. By shooing contagious patients off to remote treatment complexes, Dr. Bodington had inadvertently pioneered the concept of infection control. Keeping sick people away from vulnerable populations seems so obvious now. But back then, would the idea of germs — invisible, flying disease pods — have sounded any less silly than magic air?
I tried seeing a therapist after my quarantine order was finally lifted. My mom made the appointment. I didn’t really want to go; I’ve never liked therapy.
But I hated doing this to my mom. This wasn’t just my crisis; it was my family’s too. And it was harder on my mom than anyone. She’d just spent 10 days next to me on a cot in the Denver ICU after my first lung surgery went wrong. She’d held my hand when the stiff chest tube draining blood from my lungs made breathing hurt so badly I got tunnel vision. She’d lost so much weight and was thinner than I’d ever seen her. So when she kept insisting that I talk to someone, I figured I could force myself to muster an hour of sincerity. And if I didn’t like it, I could lie, quit, and just find my own answers in some book.
I got to the office and we made our introductions. Then I broke the ice.
“Has anyone ever told you that you look like Laura Linney?” I asked.
She paused. For too long.“No. I’ve actually never gotten that.”
“No. I’ve actually never gotten that.”
BULLSHIT. She looks exactly like Laura Linney.
“I spoke to your mother on the phone. She said you contracted tuberculosis while you were in the Peace Corps in Russia?”
“No, I was in Ukraine. But yes. I mean, it was the Far East. The Russian-speaking part.”
“And so you’re going through chemo now? How long is that?”
“Well, I was hospitalized in Denver and got the part of my lung removed with the TB on it last month. So now I’m on chemo. It’s the IV drip. None of the radiation stuff. And I never lost my hair. So I don’t know if it even counts. I have nine months of that, and a total of two years or so on everything else.”
OK, it’s not like I’m uniquely hyperaware of Laura Linney or something. There’s no way I could be the first person to notice.
“And then…it goes away?” she asked.
Wait, is she pissed? Why? It’s a compliment, right? Hold on. Does she just, like, hate Laura Linney?
“Knock on wood. It can come back, hypothetically,” I recited. “That’s why they treat it so aggressively. They just want to make sure that it’s really, really dead. But they can’t, like, promise you anything.”
I went back once or twice for additional sessions. I tried to explain that I wasn’t scared about dying or anything. By then, doctors seemed confident that I wouldn’t. But I had this anxiety I couldn’t shake. I wanted closure in Ukraine, and the people in my town. I wanted to be moving toward something. I tried to convert the emotional fallout into a momentum that more closely resembled psychosis. I took 36 practice LSATs but was hospitalized the day of the test. But panic was a problem I couldn’t obsess my way out of. I’d pick up a book but just hold it in my lap and forget what the hell it was for. I had no job and no idea what to do with myself. I lived with my parents, who at that moment seemed to be trying to keep me alive by never letting me out of their sight. I felt timid and stuck. I felt cheated out of that rosy immortality my friends had. All those toxic meds made me feel like someone else. I was very, very tired. And I felt like I was failing. I wanted my sense of control back. I was so damn sad.
My mom picked that therapist because she specializes in treating patients with life-interrupting illnesses, like MS or cancer.
“It can be hard for people to lose their control,” the therapist told me. “Here’s something I suggest that people can do to feel like they have some power over everything. Next time you go for an infusion, try to close your eyes and think of the chemicals in the drugs coursing through you, attacking all of the bad cells. And concentrate on them, and really see them. Then, envision the chemo forcing them out of your body. Picture them floating away.”
I skipped my next appointment and never rescheduled. It wasn’t a therapist that I wanted. I wanted to connect with other patients like me.
I’m not the only person to conclude that TB patients may be uniquely equipped to help each other. In 1907, a Boston-area internist named Dr. Joseph Pratt had the same idea while searching for innovative treatment alternatives for TB patients who couldn’t afford faraway sanatoriums. He had the hippy-dippy idea that bringing patients together could replicate the revitalizing effects of places like the National Jewish Hospital for Consumptives, and help patients heal. Couldn’t they guide each other through the experience better than any doctor could?
Pratt tested his hunch with a trial of a dozen patients. Modern medicine’s first recorded support group was deemed a success. Moral support really did help combat tuberculosis. His destitute patients had made do without the magic air that wasn’t really magic and replaced it with something that was.
That’s one thing the sanatorium era got right that today’s TB control programs get wrong: the need for community. Today, the sanatorium era is thought of as a relic of medical quackery rendered moot by modern science. But to mock it in favor of enlightened antibiotic cures is to dismiss the lived experience of patients. For all their problems, sanatoriums were designed to heal patients. Today, treatment is primarily concerned with limiting threats posed to others. Patients’ lives are collateral damage.
I showed up at the radiology department of George Washington University Hospital in Washington, D.C., for my final chest X-ray in late spring of 2012. I stood in the yellow foot outlines and assumed the TSA body scan position without even waiting for the technician’s spiel.
“Oh, you’re an old pro, then!” he said from the processing room. “OK, deep breath and hold it… Good… Now let’s just make sure that… Whoa, you’re missing a big part of your lung! Sorry, wasn’t expecting that!” That makes two of us.
But the Mycobacterium tuberculosis had indeed been destroyed. What was left of my lungs showed up as solid black — just as a healthy X-ray is supposed to be.
But somehow, it wasn’t as satisfying as I’d hoped. Once again, I wanted to share the moment with someone who understood what it meant. Moral support is nice for the good stuff too.
I began to find out how many patients felt the same way in June 2013, when I finally went back to Ukraine. I made a ring around the country to gather data for my master’s thesis: I traveled to Kiev, Lviv, Crimea, Mariupol, Kharkhiv, Lugansk, Donetsk, and my beloved Antratsyt. I visited hospitals, clinics, and met doctors, health care and nonprofit workers, and, of course, patients. No matter who they were, tuberculosis had a profound impact on their lives. Many had lost friends or even family members over their illness, or felt forced to keep the experience secret. Loneliness and shame were practically the default.
For as long as I’d spent surviving and learning about tuberculosis, one big question stuck in the back of my mind. I posed it to Oksana Viktorovna, a training coordinator for the Stop TB in Ukraine initiative in Donetsk. Why, I asked her, is there so little communication and coordination within the TB patient community, and so much of it — working successfully, by the way — in other diseases?
“You’re right,” she told me. “People are ashamed to be associated with the fringe. And even though TB is curable, the stigma makes them think it would be better to have cancer.” And perhaps, she continued, people who survive TB are ready to forget it and move on.
But, this might be changing, Oksana said. Lately, she’d noticed a few groups pop up online, on Russian networking sites like LiveJournal and VKontakte. Some people even created entirely new accounts to be able to discuss their lives with tuberculosis anonymously. “They write about their experience, their worries, their questions,” Oksana told me. “It seems to increase their optimism. I think it helps them get better.”
The clandestine online TB clubs were easy to find. As soon as I started poking through them, I found someone my age from Khabarovsk, Russia, whom I felt like I already knew.
I finally met Ksenia Shchenina face-to-face in Moscow this past spring. Even in the tourist-thick crowd by the famous Tretyakov Gallery, she wasn’t hard to spot. By now we’d already spent hours of our lives talking on Skype.
Ksenia maintains a patient-centered website about TB, as well as pages in English and Russian across several social media platforms. Her project’s slogan, “Being ill isn’t shameful,” challenges the negative cultural narratives about TB and the people who have it. Visitors can read the blog she kept during her treatment and her interviews with doctors and survivors. She regularly interacts with new patients from all over the world.
Social media has the potential to finally address the long-standing need for support among TB patients. Last month, Doctors Without Borders published a study that identified serious benefits for users of these online platforms, including TB & Me, the organization’s own blogging portal. Social media, they conclude, helps MDR patients adhere to treatment, gain back a sense of control, fight feelings of despair and solitude, and educate health care providers and the public. After treatment, survivors like Ksenia can continue to serve as mentors and advocates for the global patient community.
I strolled with Ksenia across the Bolshoy Moskvoretsky Bridge, along the edge of Red Square, and up the fabled Arbat Street. We drifted between languages and talked about being sick. I told her how badly I wished I knew people like her back when I was diagnosed.
“I can’t find the words in English to explain how much I agree with you,” she said.
I’m not sure I could have, either. But then, it hit me: “I’ve spent years researching tuberculosis. I’ve toured hospitals, read books and articles, conducted dozens of interviews. But this is the first time I’ve ever told my story to another patient.”
How magical to find her in a world with 5,000 miles, two screens, and three healthy lungs between us.