Diary of a Modern Consumptive
In his new book, author & advocate Paul Thorn shares his personal experience surviving Multidrug Resistant TB
by Alina Oswald
On September 26, 2018, world leaders met in New York City at the United Nations to attend the UN General Assembly High-Level Meeting on the Fight to End Tuberculosis. The theme of this very first meeting of its kind was “United to end tuberculosis: an urgent global response to a global epidemic.”
As mentioned on the General Assembly of the United Nations website, tuberculosis is “the top infection killer in the world.” In 2017, TB killed some 1.6 million people, including 300,000 people living with HIV.
Other organizations on the forefront of the fight against TB and HIV epidemics have added their voices to share the reality of the situation. The Gates Foundation, for example, reports that in 2016 there were almost half-a-million cases of multi-drug-resistant tuberculosis (MDR-TB). In the same year, 375,000 people died, worldwide, from TB and HIV co-infection.
Numbers tell their stories, but people involved in the fight to end these epidemics—patients and caregivers, advocates and researchers—are the ones who bring these stories to life. And people’s stories are oftentimes harrowing stories of loss, suffering, fear, isolation, as well as of hope and resilience.
While TB is still here, still touching and oftentimes taking the lives of too many people, regardless of their HIV status, the disease is often associated with bygone years. Tuberculosis, also known as “consumption,” was referred to as “the romantic disease” and associated with writers and poets such as John Keats, George Orwell, Katherine Mansfield, and many others.
The work of some of these consumptive writers became a source of inspiration for Paul Thorn’s new book, Diary of a Modern Consumptive, in which he documents his own experience of being diagnosed with and surviving multi-drug-resistant tuberculosis back in 1995, only a few years after being diagnosed HIV-positive. Diary of a Modern Consumptive is based on a diary Thorn kept while in the hospital, being treated for MDR-TB. The book documents how he “was infected, the diagnosis, the loneliness of isolation,” and also “the masked and faceless people” caring for him, “the hardships” of his treatment and, eventually, his cure, and everything in between. It tells a poignant and powerful story of isolation, pain, fear, and also of survival. As with all Paul Thorn’s books, what comes through in particular in Diary of a Modern Consumptive is the author’s honesty, the candor with which he writes about his experience.
Diary is an indelible read, powerful enough to possibly forever change our perspective on and about life and what we consider important in our life. And that’s why it’s surprising to learn that the book almost didn’t happen.
“I’ve found writing very cathartic in the past, particularly my book, HIV Happy [A&U, October 2015],” Thorn comments. “The process forces me to consider things on a deeper level. In all honesty I have been frightened for years to write Diary of a Modern Consumptive.” And yet, writing his latest book was far from being a cathartic process. In the book, commenting on his hesitation and why the book ultimately…won, Thorn writes, “I’ve wanted to write this book for some time, but the problem had been that I couldn’t face reading [the journals] again in any detail. I kept making excuses and stalling. I’d really tried to give up on the idea of writing this book, but the idea had only gotten stronger over time. […] Being haunted by it indefinitely was not a chance I wanted to take.”
While reading Diary of a Modern Consumptive we can draw several parallels between TB and HIV/AIDS, in particular when considering the early years of the AIDS epidemic. The associated isolation, the drug tests and their effects on patients, the fear of dying come to mind, and the list goes on. “I guess the main similarity was being reduced to the sum total of an illness,” Thorn comments. Thus, the main parallel, the main driver, is fear, which “stems from ignorance. However, HIV for the most part is behaviorally transmitted. TB is environmentally transmitted; it’s an airborne disease and for this reason [TB] seems to elicit a different kind of fear.”
As humans, we tend to “recoil” from anything perceived as infectious, the author explains. “The newness of any perceived threat is at the core. But when we understand the risks, we adapt our behavior accordingly.”
When it comes to an epidemic, to any infectious disease for that matter, there are often two kinds of fears—people’s fear of the epidemic, of getting sick, and patients’ fear of dying.
In Diary, Thorn describes both kinds of fears. About the fear he noticed on the faces of his caregivers, he writes, “I can see the fear in their eyes as they try to breathe with waspish breaths inside the orange facemasks meant to protect them from me. Only in my dreams do I escape them, these people with faces I never see.” He describes his own fear of dying as “a surge of the fear of dying, the only punctuation in what essentially is the same moment in time over and over.”
And yet, looking back at his experience, it wasn’t the physical pain or even the fear of dying that Thorn considers the worst, but “by far the isolation” associated with the disease. In Diary of a Modern Consumptive, the author recalls that feeling of utter isolation. “My world has become very small,” he writes, “a room with a bed, a chair and a window with metal bars. The stench of the dirty drain from the shower is filling my nostrils. There’s no solace from it and nowhere to escape to. I turn my mind outwards, trying to imagine the world beyond the anti-chamber’s two closed doors that separate me from a different, more pleasant reality. Lying back and looking at the ceiling, I wonder if it will be the last thing that I will ever see.”
Today, he comments on that feeling of isolation. “Solitude is something one chooses,” he says, “isolation is often forced upon one. Having TB is a truly isolating experience.” He reminds that those living with HIV find support in the “you’re not alone” message. (Thorn’s words bring to mind the song, “You’ll Never Walk Alone,” sung every year at AIDS Walk New York.) And yet, while in the hospital, diagnosed with MDR-TB, the author, who’s also living with HIV, was alone and completely isolated from everybody. “This experience shaped a lot of my ideas about independence that I write about in HIV Happy,” he says. “I was forced to learn how to live and fend for myself outside of dependency culture. That is paying a dividend for me today, so no regrets.”
Today, still, both HIV and TB can happen to pretty much anybody. And yet, TB kills people regardless of their HIV status because, the author explains, “the one thing we have in common, whoever and wherever we are, is the air that we breathe.” The biggest threat is the microbial resistance to the available TB treatments. If we don’t take action now, things could get more difficult to resolve. He believes that “we need a new approach [to TB], a human-rights based approach, not [solely] one of public health.” And in Diary of a Modern Consumptive he conveys to readers “just one personal story that provides some humanity to incomprehensible TB statistics.”
TB and MDR-TB are treatable and curable. The problem is that many of the older drugs used to treat TB have severe side effects. In his book, Thorn writes, “All people, wherever they are from in the world, should have access to the most sensitive diagnostic testing, the most effective medicines, and every effort should be made to maintain [patients’] dignity and freedom. No one [should have to] die of TB in 2018, and yet [TB] remains the biggest killer due to bacterial infection in the world.”
The author points out that health has only been the topic of a High-Level Meeting at the UN General Assembly five times in history, and yet this is the first time that TB has been the subject of such a meeting. “I think it is finally sinking [in] for the leaders of the world that we face a growing problem with tuberculosis and [multi-drug-resistant tuberculosis]. Better late than never, I suppose.”
Diary of a Modern Consumptive was released to mark the 2018 UN High-Meeting on Ending TB. An audio version of the book is also available. Find out more about Paul Thorn’s books on Amazon. Follow the author on Twitter @Paul_Thorn. Learn more about the author by visiting online at www.thornconsulting.co.uk.
Alina Oswald interviewed Bill Bytsura for December 2018’s Gallery.