September 9, 2012

Hemophilia and the Amish: A Novel based on Facts

Hard to imagine, but with health care reform dominating the elections, there are pockets of Americans who choose not to have coverage, and instead rely on out-of-pocket costs: the Amish are one such group. 
And while a novel, the book The Choice (2010) by Suzanne Woods Fisher, depicts life with hemophilia in mostly accurate terms in the Amish community. The following was submited by our wonderful PEN contributing writer, Richard Atwood, of North Carolina.
Weaver, a blond-haired, blue-eyed Amish girl in Lancaster County, Pennsylvania,
moves to Stoney Ridge at the age of 12 when her father, Jacob Weaver, who has hemophilia, remarries.
Her mother died giving birth to Carrie’s younger brother, Andy. Over two years, Carrie has to suddenly grow up and make adult decisions
that test her faith. Solomon Riehl, or Sol, who was born and raised Amish,
receives a one-year contract to pitch baseball for the Lancaster Barnstormers.
Sol asks Carrie to marry him outside the community. Sol enjoys his running-around
years, the Rumspringa, that period before joining the Amish Plain folk with baptism,
while being lured by the worldly “English” life. Carrie, who is attracted to Sol, is
tempted to elope, despite objections by her father, until a horse unexpectedly
kicks Jacob in the head. The Amish do not accept government assistance and do not buy health insurance. Esther, Jacob’s second wife, thinks infusions of factor IX cost too
much so Jacob receives no treatment for this accident; he dies. 
Carrie’s biological mother had been a frail carrier of hemophilia; Carrie’s brother also has hemophilia. Carrie quickly makes a life-altering choice; she chooses to care for
her brother and to marry her father’s preferred suitor, Daniel Miller. Their marriage,
held soon after in September, is one of convenience that is not consummated. Unfortunately,
Daniel is killed in the following March when his horse and buggy are struck by
a teenage driver speeding in her car. 
Now a young widow, Carrie assumes
the responsibilities of a farm and a brother with hemophilia. Other household
members include her older stepsister, Emma, who is looking for a husband, and
Daniel’s cousin, Abel, who was recently released from prison in Ohio. To add to
Carrie’s problems, the deed to the farm is in Abel’s name and an unscrupulous
land developer wants the Amish farms for a golf course. Carrie has never
resolved her feelings for Sol and her choice of being Amish. Nine-year-old Andy
is bullied by the English neighbors for having hemophilia. He is overly
active, resulting in separate accidents of a broken arm and a cut heel
requiring stitches and medical treatment. “Later, at the hospital, Carrie sat
by Andy’s bedside in the emergency room as a long tube snaked from an IV bag
into his vein, filling him with factor IX to help his blood clot. Mesmerized by
the television hanging on the wall, Andy watched it, slack-jawed.” (p. 28).
Richard writes, “This
romance novel illuminates the struggles of the Pennsilfaanisch Deitsch
(Pennsylvania Dutch) to maintain their Plain folk lifestyle while coping with
intrusions by the “English.” The characters usually speak English though they
occasionally interject the Deitsch vernacular, followed by an English
translation in italics to assist the reader. The rare case of a person with
hemophilia marrying a carrier of hemophilia is accurately described and is
possible due to the marriage patterns in this closed community. Other than the
unexplained treatment in the hospital of using intravenous bags rather than
syringes for factor IX infusions, the portrayal of having hemophilia is
realistic, with treatment covered only by personal payment. The
author, whose grandfather was raised Amish in Franklin County, Pennsylvania,
lives with her family in San Francisco, California.”
We’re fortunate in that some HTCs, such as the Indiana Hemophilia and Thrombosis Center, care for the Amish, and don’t use bags of plasma! The Amish are a true community: when there are extreme medical costs, the community rallies together to pay for the treatment without relying on hand-outs from the government. Difficult but highly admirable. A good read, which Richard recommends.

Suzanne Woods Fisher, 2010, The Choice. Grand Rapids, MI: Revell. 309 pages.

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