#tbt author interviews and book reviews originally published in A&U Magazine
Coming Out of the Chrysalis
Author & activist Paul Thorn talks about his new book, The Broken Heart Toolkit, and finding a better sense of self
by Alina Oswald
If someone you love hurts you, cry a river, build a bridge, and get over it,” an anonymous but wise person once said. Yet, finding the strength to build that bridge is no easy task. It requires time to heal and courage to find hope yet again. Sometimes, hope might seem lost. And yet, we can find it in the form of a new book by Paul Thorn, The Broken Heart Toolkit, an easy-to-follow survival guide that outlines how to build that bridge “from heart-hurt to heart-healthy.”
Many might be familiar with Paul Thorn’s book, HIV Happy. Living with HIV since the age of seventeen, Thorn has also lived through the darkest decades of the epidemic. In the process, he has become an HIV activist, using writing as his tool to fight AIDS. Recognized worldwide for his work, Thorn also played an important role in overturning the travel ban preventing HIV-positive people from entering the United States, back in 2009. A few years later, in 2014, he was a finalist for the Stonewall’s Journalist of the Year.
In HIV Happy, as well as in The Broken Heart Toolkit, Thorn writes about “finding a better sense of self.” In HIV Happy he explains the steps to finding or rediscovering that sense of self in the face of loss of health, “in the face of illness,” and in his latest book, in the face of loss of love and being left broken-hearted.
Both books, HIV Happy and The Broken Heart Toolkit deal with change and the often long and difficult journey we sometimes have to take through that change. To better emphasize the message, Thorn uses the chrysalis metaphor in The Broken Heart Toolkit, but in an unexpected way, yet one that makes perfect sense. “It’s not anything to do with any eventual rebirth, turning into something beautiful,” he writes. “The lesson we can take however from the chrysalis idea is that change takes time.”
While he wrote HIV Happy with a specific readership in mind, Thorn wrote The Broken Heart Toolkit for a larger audience. What makes The Broken Heart Toolkit unique in a sea of self-help books about mending one’s (broken) heart is that it offers a practical, step-by-step guide that readers can use to find hope, self-love, and love again.
In order to achieve that, one has to reach acceptance. That’s easier said than done. It takes practice.
In The Broken Heart Toolkit Thorn explains, “Emotional pain has the potential to be the touch-paper for immense personal growth if we choose to use it as such. The first step to working with this pain is acceptance of the way things are in this moment. That sounds great in principle….
“Life isn’t ‘black or white.’ Wouldn’t it be easier if we could just accept and live with the ‘grey’?…If we could accept things as they are, be grateful for what we have, and be happy with our lot, wouldn’t life be so much easier?”
Oftentimes, relationships that shape our lives, at least in part, are “like a movie that exists only in our mind.… It’s as if we go into relationships very well-meaning, acting like a Jane Austen character in a romantic costume drama, but potentially coming out the other end like Glenn Close in the movie Fatal Attraction, trying out recipes for a rabbit. Once the relationship has imploded, if we can’t emotionally move on (to use another character analogy), at the extreme we can become like Miss Haversham in the book Great Expectations by Charles Dickens. Jilted, still in her wedding dress, she waited into old age for her man to return, only to eventually fall into the fire.”
In order not to fall prey to fiery, damaging relationships, the author encourages us to look back to each of our relationships, even the failed ones, and learn from them, see them “as a gift” or a lesson in love and life. Only when we learn these lessons can we truly move on with our lives and find that hope, acceptance, self-love and someone to love again.
And when we are ready to move on with our lives, Thorn offers a list of categories we should consider revisiting in our lives: Health and Self, Relationships, Home, Work, and Finances.
In his book, the author explains each one of these categories in great detail.
The first category, “Health and Self,” covers not only physical health, but also emotional health. “Being kind to ourselves” is important, in our lives and our love lives. “The most important relationship we can have is with ourselves.” Thorn writes. “You occupy the top step of the pyramid.… Sometimes, to rebalance things we have to be purposely selfish—in the most positive way. Having the self-worth to put our own well-being first is going to be difficult for some, but not doing so is down to old programming and we have to choose change. Try it—you might be surprised!”
Relationships we have with others are also important. They help us learn who our true friends are, and what individuals “we need to keep at arm’s length for our own preservation.”
Home, Work, and Finances define the building blocks of our lives. They offer a sense of safety and security. But “truly understanding and knowing the difference between what we need and what we want is liberating,” Thorn writes. “It helps us to focus on what’s really important.”
Nowadays, the author tries to focus on and improve the quality of his life, or what he refers to as “QOL.” He started working on this goal by writing a list of things he’s grateful for, seeing the glass half-full.
Maybe what we, the readers, can take from Paul Thorn’s new book is not only a toolkit to help rebalance our lives and the relationships in our lives—with ourselves and with others—but also to learn about the power of gratitude, see the glass half-full and give ourselves a good reason to see it that way.
Written from the author’s heart, and also from his personal experiences, The Broken Heart Toolkit is a workbook that anyone and everyone should keep handy. It is a survival guide in particular for the broken-hearted living with HIV.
“People living with HIV often experience a sense of urgency about things generally,” Thorn says. “This can lead us to get into relationships that aren’t right for us, especially as we grow older with effective treatment to manage the virus. No one wants to get old and be alone. When we are in a relationship with the wrong person, we’re not available for the possibility that the right person might come along.” He advises, “Better to have a sound relationship with yourself first. You can be HIV-positive, happy and feel whole without being in a relationship. Get your relationship right with yourself and you will attract the same.”
Paul Thorn’s upcoming book is a new edition of HIV Happy that will also touch on HIV and aging because “none of us are getting any younger and [aging] is going to bring new challenges for people living with the virus.” He further explains, “Two years have passed since the first edition of HIV Happy. The book actually turned my life upside down after it came out! Life became very challenging. It was time for me to really live the book. I’ve made some mistakes, learned a lot along the way, and think I can develop some of the ideas that I originally presented further.”
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 at 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 of 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 and 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.”
by Paul Thorn
Reviewed by Alina Oswald
The AIDS pandemic is only one year shy of turning thirty-five. During all this time, we’ve read many, many stories inspired by the virus that started the pandemic, and also by those living with the virus. Stories often capture a wide range of emotions associated with HIV and AIDS—from suffering and loss, to success and victories against the virus—sketching out in a seemingly infinite of ways, the ongoing epidemic and the ever-changing face of the disease itself. Through it all, maybe one idea has remained constant—that life, or life as we know it, can, indeed, end in an instant.
Maybe this very thought triggered the idea for Paul Thorn’s new book, HIV Happy, in which the author offers a surprising and unusual take on the pandemic, in a blueprint of living life to the fullest, while living with the virus. Thorn, who, in 2014, was nominated Journalist of the Year by Stonewall, dedicates his book to his friend, Glenn Thomas, whose life ended just over a year ago, on July 17, 2014, when he was traveling to the International AIDS Conference in Melbourne and Malaysian flight MH17 was shot down from the sky over eastern Ukraine.
HIV Happy offers a short and to-the-point, brutally honest yet much needed self-help read, in which the author shares his own experience of living with the virus, and details, with much clarity, the five pillars of living HIV happy: health and self, relationships, home, work, and finances.
We all need these five pillars in our lives, regardless of our HIV status. In that sense, HIV Happy reaches many of us—HIV-positive or not—on a personal level, daring to touch on issues we often hesitate to talk about, such as living with low self-esteem or dealing with the curve balls life throws our way, and helps us recognize our second chances and make the best of them, in order to live happy, and full lives.
“Happiness comes from being grateful for what we have already in our lives and acknowledging it. We so often take what we have for granted.” Thorn writes in HIV Happy. “[I]t isn’t about reaching up for something, but simply reaching out.”