The Family That Couldn’t Sleep by D.T. Max

Last night, sluggishly chugging up to New York from Philadelphia I finished The Family That Couldn’t Sleep by D.T. Max. I got the book at work and will now return it to the shelf of review copies and lonely hardbacks near the window, but it will be returned by someone very satisfied, unlike, I imagine, most of the others on that shelf.

TFTCS is about fatal familial insomnia that is exactly what it sounds like, an inherited disease that causes an insomnia that kills you. One day, usually in middle age, after all the baby-making is done, the victim’s pupils get really small, they start to sweat uncontrollably and they never really sleep again. It is a horrible way to die—as the body shuts down, the victim remains conscious, in fact they can never escape consciousness, expect maybe into a half-sleep that doesn’t refresh or into hallucinations that terrify more than they comfort. Members of the pseudonymous Italian family that harbors FFI know at this point that their loved one is going to suffer and die, and they also know that there is nothing to do to stop it. When FFI brains are autopsied they are full of holes and sometimes full of clumps of dead protein strands. Only forty families in the world are known to have FFI, but as Max’s book deftly shows, the story of prion diseases, of which FFI is one of a handful including mad cow disease, is complicated, important and fraught with intrigue and strange characters.

The introduction to this book left me cold. I am not sure why. However as soon as the chapters began I was immediately drawn into the story of the Italian family whose story frames the book and the larger story of the discovery and investigation of prion diseases, misunderstood because they are not alive like viruses or bacteria, they don’t have a clear transmission path and they don’t have an easy or uniform presentation. I learned so much from this book and was entertained thoroughly for the weeks I read it.

It is hard to come up with a passage to quote for you to show Max’s elegant style. This book was great for the way he presented the story, allowed for interesting digressions and made scientific concepts easy to understand and fit into a larger discussion of the way medicine and science work in the discovery of new diseases. As I read, questions that arose were answered, avenues I never thought of were peeked into and unexpected details popped from the story and into my imagination.

Short review: I loved it and loved the surprise of loving it.