Diary of a Modern Consumptive by former TB patient, Paul Thorn, tells a remarkable story of survival. In 1995 Paul was infected in an outbreak that occurred at a West London hospital with a multidrug-resistant strain of tuberculosis. He spent three months in negative pressure isolation and was not expected to live. Whilst cut off from the world, he kept a journal. Aged only 24 years, he was about the same age as Keats when he died from the disease. His predicament caught the imagination of the UK press and the public began to write letters to him.
Diary of a Modern Consumptive follows an artistic tradition. In centuries gone by tuberculosis made a major impact on the artistic world. Artists offered their own commentaries on the disease through painting, poetry and opera. ‘Consumption’ was almost a defining feature of 19th Century Romanticism. Literature was also inspired by tuberculosis. Writers such as the Bronte sisters, Chechov, John Keats, D.H Lawrence, Robert Louis Stevenson, Katherine Mansfield and George Orwell (to mention only a few) all wrote about it. The truth is that the impact of tuberculosis on literature was merely a reflection of the savagery of the disease. It’s course is insidious, some took months or years to die from it, their lungs consumed by the bacteria until drowning on the bloody contents of their lungs. Paul’s book is a modern take on some of the most compelling ‘consumptive’ literature ever written. It brings the experience of having the disease up-to-date and includes excerpts from his diary, the letters sent to him, and the reaction of the UK media at the time.
Jennifer Furin MD., PhD. of Harvard Medical School, Department of Global Health and Social Medicine, wrote the foreword for the book. She says; “The experience of this devastating illness is the subject of Paul Thorn’s riveting biography, Diary of a Modern Consumptive. In the living pages of this book, we are given a first-hand account of what it is like to live in isolation while battling with a mortal disease. It is a shattering story of the failures of modern medicine when it comes to TB. It is also, however, a miraculous memoir documenting the power of human connectedness even in the face of severe and imposed confinement.”
Jennifer Furin continues; “Paul’s journey is not an isolated event. Even now, millions of individuals face the same catastrophic experiences he eloquently describes. Much of shared suffering can be attributed to the way the global community has responded to the problem of TB using a public health approach. The public health approach—usually sold as a means of achieving the best results for the most people at the lowest cost—is a weapon often wielded in the war against infectious diseases. While there may be some merits to conceptualizing and responding to the world’s plagues in such a fashion, the public health approach is also incredibly dehumanizing. It sacrifices the pain of individual people on the altar of benefit to an often-abstract human mass. And to date, this public health approach to TB has failed, as seen in the dismal global statistics, the lack of new diagnostic and treatment tools, and the planned exclusion of vulnerable populations, most notably children.”
Furin says; “There is, however, an alternative TB strategy that could finally turn the tide against this age-old scourge: a human-rights based approach to the disease. Paul provides a blueprint for such an approach in his diary, which stresses the significance of each person’s unique journey with TB. A human rights-based approach to TB means putting the person with TB at the centre of all activities and striving to achieve the best possible outcome for every single man, woman, and child who is affected by the disease. It means that all people with TB – regardless of their geographic location or perceived level in society – have a right to the most sensitive diagnostic tests, to be treated with the most effective medicines, to be provided all the means to prevent the development of TB, and to receive care in a way that allows them to live dignified and productive lives. It does not view the provision of such services as extravagant extras, but rather as the fundamental rights of every person to life and health.”
Diary of a Modern Consumptive by Paul Thorn is available in paperback from Amazon. It’s also released as an audiobook (narrated by Adam Smith) on Monday 22nd October and will be available on Amazon, Audible, and iTunes.
Listen to excerpts at www.tbpeople.org.uk/opinion.