Back in November Rebecca Skloot put out a tweet asking for readers/reviewers to contact her if they were interested in a book on the philosophy of illness from a professor in the UK. I responded, got the author's contact information from Rebecca, and a package containing Illness: The Cry of the Flesh arrived in December.
Havi Carel writes about the phenomenology of illness from two perspectives: as a professor of philosophy and as a woman diagnosed with a rare, life-threatening illness. In 2006 Dr. Carel was diagnosed with lymphangioleiomyomatosis (LAM), a sporadically occuring disease caused by spontaneous proliferation of smooth muscle cells in the lungs, blood vessels, and lymphatics; LAM strikes almost exclusively among women in their childbearing years. There is no effective treatment available with lung transplantation recommended as a palliative treatment when a patient's pulmonary function significantly declines.
Now, having read Dr. Carel's book I'm sure she doesn't appreciate my effortless ability to reduce her life to a summary of symptoms and dismal treatment options. It's a habit (sorry). I'm researcher in hospital epidemiology and I can abstract a PMH/ROS (past medical history and review of systems) with the best of them. I don't usually see patients so I just sit in my office and read charts looking for quantifiable information - dates, numbers, symptoms - I can translate into statistics. However, when actually working with patients (or even interacting with friends undergoing a significant illness) reducing a person to first a disease then to a symptom list and prognosis doesn't do the ill person any favors.
That is exactly the point of Illness, to find a way to bring phenomenology into the normativist and naturalistic philosophies of chronic illness. Phenomenological approaches to illness focus on the "experience of being ill: illness as it is lived by the ill person" (p 12). This is actually quite useful because we all experience illness differently. The same biological markers of a disease will cause quite different experiences in two individuals. Dr. Carel uses the philosophies of Martin Heidegger and Epicurus to show how a phenomenological approach allows a chronically ill person to find health within illness and to allow oneself to be both ill and happy. She also uses her own experience as a chronically-ill person to illustrate those concepts.
Although it is a work of philosophy, Illness is meant to be read by people from all walks of life: layman, friend, colleague, healthcare worker. The writing is clear, concise, and thoughtful. Philosophical concepts are well-defined and illustrated with many examples. The clarity of Dr. Carel's writing is most apparent in Chapter 4, "Fearing death"; she uses the work of Epicurus (who argued that a fear of death is irrational) to examine how an ill person should prepare for death, how to have an fully-lived life while accepting one's remaining time is limited. While reading this section of Illness I kept thinking of my maternal grandmother who in all probability never read a work of philosophy in her life but would have agreed with Epicurus. Grandma was diagnosed with mutliple myeloma when I was twelve and fought her disease for seven years but the treatment options ran out during my freshman year of college. Did she sit around, moping and moaning that she had very little time left? If she did, she never let us see it (I think her own mother would have come back to haunt her if she had). We still had Christmas with all the trimmings, greeting cards on the holidays (the messages written in an ever-shakier hand), and those ever-present inquiries into how school was coming along (I spent a weekend studying calculus in the ICU when she was very ill one week; the first question she asked me was whether or not I'd done well on my last exam). She never expressed any fear of "the undiscovered country" - she died quietly and with dignity.
This has been a hard review to write and I've been working on it for over a week; I very much liked Illness and am very grateful to Rebecca, Dr. Carel, and Acumen Publishing for the information and review copy. Illness has made me reflect on professional and personal experiences and to look at my interactions with ill people in a different light. We can all use a book like Illness - we all know someone with a serious illness and there is a great likelihood that most of us will personally develop chronic medical disease before we die. I think Illness would be of great benefit to medical curriculae in particular. "Empathy" is always stressed during training but I think Dr. Carel's work would help healthcare workers understand how to integrate empathy for the ill person with medical care for the biology of the actual disease.
Current book-in-progress: What are Intellectuals Good For?, The Omnivore's Dilemma, and The Lightning Thief
Current knitted item: baby sweater
Current movie obsession: Gosford Park
Current iTunes loop: John Mayer