By Sara Aslagson-Sahar
Extraordinary Means by Robyn Schneider is a brilliant look into life as a teenager with a chronic illness. This story takes place at Latham House sanatorium. Latham House is a former boarding house, now part-school, part-hospital, in a remote area of the Santa Cruz Mountains for teens with total-drug-resistant Tuberculosis (TDR-TB).
While TDR-TB is not a disease currently in existence, multidrug resistant Tuberculosis (MDR-TB), an extreme strain of Tuberculosis (TB) that is resistant to many forms of treatment, is a real disease. TB is a disease that is caused by bacteria spread through the air usually affecting the lungs. It is treated with antibiotics for six to twelve months. The antibiotics are used to treat both the infection and to help prevent bacteria from emerging in your body. MDR-TB emerges often when the full dose of antibiotics is not taken, though there are other reasons it could emerge. MDR-TB is a strain that is resistant to two of the most common TB antibiotics, making it more difficult to treat.
At the beginning of this story Lane has just arrived to Latham House for the start of his senior year of high school. Lane is frustrated because he does not want to be at Latham and would much rather be at his “normal” high school. So he arrives incredibly determined to get healthy and get back to his normal school, that way he can retake the SAT, maintain his 1st place in class rankings, and apply early action to Stanford. On Lane’s first day at Latham he is approached by a fellow resident named Nikhil, known to all of the students as Nick. After their friendly encounter, Lane notices Nick goes back to a table occupied by Sadie, Marina, and Charlie. The vibrance coming from their table causes Lane to watch them. After observing for awhile, Lane realizes that Sadie was his crush from Camp Griffith, a summer camp they both attended four years previous.
Sadie has been at Latham House for two, almost three, years. She was removed from her high school in her sophomore year and has made Latham her home. Gone are the days of her social outcast camp self. She now is surrounded by her friends, Marina, Nick, and Charlie, who all make an effort to maintain a seemingly “normal” life—wearing real clothes to class instead of pajamas—and frequently ignoring Latham’s rules—operating the campus black market. After participating in a class prank, Lane is invited to join their circle, and his whole life changes.
As a reader, I became deeply immersed in this story very quickly. I began to feel that Latham House was a real place and that Sadie, Lane, and friends, were real people. Schneider’s background in bioethics and research into tuberculosis’ past has allowed her to create a story full of life and accuracy. Yes the disease is not real, but the story, and the well-written lives and experiences of Sadie and Lane, speaks to the reality of disease and life changing events. Schneider reflects in her acknowledgements, “Teenagers have only a handful of options that humanize the illness experience, …[and] I set out to fix that.” This book accomplishes its intended goal. Sadie, Lane, Marina, Nick, and Charlie discuss many things that show the reader that at its heart, this book is a coming of age story. From jokes such as, “Is this [leaf] more jaundice yellow or liver-failure yellow” to discussions about what the difference is between being dead and dying, Schneider illustrates that life and growth does not have to stop at diagnosis.
Robyn Schneider’s writing is John Green-esque. Extraordinary Means is reminiscent of a combination between Green’s The Fault in Our Stars, and Looking for Alaska, with Schneider’s own twists and humor. Sometimes that humor can be morbid, such as in the very beginning of the book when Lane describes his room as the “best coffin in the place,” after reflecting earlier on how many people have probably died in it. But that humor and morbidity helps the reader consider how death and disease would normalize when it becomes such an active participant in everyday life.
This book also asks the reader to consider, what does it really mean to live? Lane carries the idea home after coming to the conclusion that, “…[he] hadn’t had a life, [he’d] just had a life plan.” Sadie explains that, “There’s a difference between being dead and dying. We are all dying. Some of us die for ninety years and some of us die for nineteen. But each morning everyone on this planet wakes up one day closer to their death. Everyone.” What you do with those dying days is what determines if you are living or not. This book asks the reader to reflect upon whether or not they are living in their dying days. Or if they are simply dying. As the reader journeys upon this road of life, is the journey the destination or is the focus so much on the goal that everything else along the path is missed?
If you are looking for a lighthearted read, this is not the book for you. If you are looking for a humorous book that ends up hitting you right in the feels, this book is for you. It is a book following two journeys of self-discovery. And maybe, as you read along, you will discover something of your own.
Here are some resources for dealing with chronic illness and TB.
American Psychological Association: http://www.apa.org/helpcenter/chronic-illness.aspx
Chronic Illness Support Community: http://www.healingwell.com/
Centers for Disease Control and Prevention: http://www.cdc.gov/tb/default.htm