Those were my questions when I first heard of this book. Then I saw and heard popular YA novelist John Green via several media interviews and became intrigued.
Next question: Why is the author of The Fault is in Our Stars writing about tuberculosis?
Because he has obsessive-compulsive disorder and can’t stop thinking about germs? Because he met a young TB patient in Sierra Leone, and needed to tell his story?
Yes.
And here is another answer: “Everything is tuberculosis” because the disease has permeated our social history and popular culture, while it remains a serious health risk in impoverished countries.
It was, at times, amazing (and disheartening) to realize how true this is. Perhaps, for example, New Mexico is a state because of TB. (It recruited consumptives to live there in order to achieve the white population the laws required at the time.) The man who invented the cowboy hat had moved out west to recover from the disease.
The three major conspirators in the assassination of Archduke Franz Ferdinand, which began World War I, were consumptives.
This book was fascinating, at times heart-rending, and written in an engaging style.
Green takes us through the history of TB. Once, it was widespread and incurable. Also, it was misunderstood. Its infectious nature was unknown. Consumption, as it was called, was even thought to be romantic. Didn’t it seem to affect poets and other creative types more frequently? (Well, John Keats and all the Brontë sisters did die from it.) Young women aspired to achieve “consumption chic” with pale skin and sunken cheeks.
The TB fashion trend hit a wall when the disease was proven to be contagious. Moreover, although many people harbored “tubercules” in their bodies, these often did not blossom into disease without extenuating circumstances. Poor and unsanitary conditions could spring the TB into life.
Prejudice and racism ensued, and an era of shunning began. Sanitariums were built across the country. Patients languished in the institutions: The main treatment was rest. Some, including children, lived for years in these places, seldom visited and often feared by staff.
Finally, cures were found and TB virtually eradicated in places like the U.S. But other countries have not fared so well.
Green was on a health fact-finding trip in Sierra Leone when he met Henry. He first thought the young man was the same age as his own son Henry—nine. But Henry was a teenager who had been suffering from TB for years and, yes, languishing in a hospital. Except Henry was bright and introspective. He was eager to meet new people, and recorded his thoughts and feelings in journals and poetry.
Henry’s story is woven through the book, and it is an amazing one. Initially I thought this story was posthumous, and Henry did come close to death. It was only through the efforts of a tenacious and dedicated doctor that he finally received the treatment he needed.
There are cures for TB—but, of course, money is a factor. Distributing drugs in countries which lack a good medical infrastructure also is an issue. And prejudice remains a problem.
Henry is now a college student with his own YouTube Channel. He has an infectious energy and optimistic outlook. It’s difficult to reflect on how this ray of sunshine (which is how I came to regard him) could have ended up just another sad statistic.
It’s difficult to realize that after centuries of experience with TB, after 70 years with a cure, we’re still losing people to this terrible disease.
Everything is tuberculosis, indeed.
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