Human Spirit

A fantastic teaching novel about Huntington's disease. Lisa does an excellent job of driving the reader through a realistic everyday families experience with the disease; their emotions, experiences, hopes, and desires. ( )

A heartbreaking view of a family whose life is impacted by Huntington's disease. Personally, I cry for people with Huntington's- it's the worst of all possible worlds and a disease that cries out for access to euthanasia. No cure. As far as I know, little progress toward a cure. I've nursed people with Huntington's as they lay on a mattress in a bare room in a psych ward. Hellish.
This book takes us through the discovery in a middle class family that they carry the disease. I can't imagine how a family would cope with this news in the US. The costs!!! The financial doom, plus the physical one. Genova does her usual excellent work of bringing the fictional daily to life, and it is heartbreaking.
And it asks the question- if you knew your family had this gene, would you want to know you had it? ( )

Lisa Genova invented the genre of "neurofiction," which seems to be a mash-up of pedantry about neurologic diseases and kind of banal fiction. Maybe I would have enjoyed it more if I didn't know anything about Huntington. Since I almost certainly know more about Genova does about HD (in that I'm a board certified clinical geneticist and she's...not.) I just got a kind of run-of-the-mill family tension novel.

As part of my job, I get referral e-mails from our international medicine team, bulky with attachments of clinical charts from all around the world. Often this results in me reading them while pacing my office and swearing as the diagnosis dawns on me and I can't tell if the referring team has figured it out. That's how I felt for the first 90 pages of this book: a laundry list of textbook symptoms of HD that seemed to happen absent plot or character development. To the point where I could see it in my own e-mail shorthand in my head: "40s yo m w new onset invol mvmts and labile emotions, ?subacute duration up to 10y. Fhx notable for mother w poss same. High concern for HD, rec urgent appt w genetics for counseling & HTT repeat expansion analysis." Needless to say, I found those 90 pages stressful rather than enjoyable.

Once the HD cat was out of the bag, the novel swung to focus on Katie, the youngest daughter, stopping along the way to rack up treacly family scenes. Katie was supposed to be the audience self-insert character, but I found her paralysis and self-absorbed self-pity infuriating rather than sympathetic. After the HD textbook checklist had been marked off, it kind of felt like HD could be replaced with basically any family tension McGuffin and the book just felt really generic.

My other complaint was the portrayal of the genetic counselor. As the only authority figure appearing in the book, it really annoyed me that he was a man, while most GCs are female. It seemed to be done on purpose for sexual tension between the GC and Katie, which is just so inappropriate and gross.

Reviewing it, I think it sounds like I hated the book; I didn't, I just found it really bland. I also think this genre is important for encouraging more awareness of HD and genetic disease in general, but I didn't need it. ( )

An interesting read about a cruel disease and it's effects on one family. I didn't like the ending much but did get why the author chose to end it where she did ( )